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TweetReach Snapshot for

#RarePOV

estimated reach Information

The estimated overall reach of tweets in this report.
302,917
accounts reached

exposure Information

Exposure is the number of overall impressions generated by tweets in this report - the total number of times tweets were delivered to timelines (including repeats). The graph breaks down how many of the tweets in your report were sent by users with that many followers.
1,831,833impressions

Bars show number of tweets sent by users with that many followers

activity Information

Activity provides details about the tweets in this report, including the total number of tweets and unique contributors, the time period covered by the report, a graphical timeline showing tweet volume during the report period, and tweet type breakdown.
916tweets
163contributors
9days

top contributors Information

In order to be included in this section, a person must have tweeted at least once in this report. The top three contributors in this report are:
  1. Highest Exposure - The contributor who generated the highest exposure from direct impressions.
  2. Most Retweeted - The contributor who received the most retweets.
  3. Most Mentioned - The contributor who was mentioned the most times.
454.2k impressions
LillyPad

most retweeted tweets Information

The top three most retweeted tweets in this report, including retweet counts for each tweet. This includes both new-style automatic retweets and old-style manual retweets that start with “RT @username.”
11
FasterCures
Q3 #RarePOV Help the FDA decide what is “effective” for a #patient. Sometimes effective is quality of life improvement, not a complete cure
8
PhRMA
Great discussion on #rarediseases from a number of groups happening now. Follow #rarePOV to join in
8
GlobalGenes
Great power in numbers of educated advocates working together towards a common goal in an easy to access and cost-effective way. #RarePOV

contributors Information

A complete list of all contributors (participants) in this report, including how many tweets they posted, how many retweets they received and how many impressions their tweets generated. This list is ordered by impressions.
  Tweets RTs Impressions
LillyPad 8 7 454.2k
PhRMA 22 33 276.8k
SDFatPhRMA 140 23 117.3k
FasterCures 27 50 91.3k
RareDiseases 15 23 86.2k
teaminspire 12 8 81.4k
GlobalGenes 16 9 69.2k
NHCouncil 11 7 57.2k
IAmBiotech 1 0 52.7k
GlobalHealth 2 1 43.3k
Neil_Rubenstein 27 5 38.5k
matthewherper 1 0 31.2k
AfternoonNapper 23 21 25.8k
alsadvocacy 13 3 24.2k
RemRunner 26 18 24k
CCatPhRMA 19 10 21.8k
PracticalWisdom 3 0 17.3k
RareDR 9 6 15.6k
iCareAware 8 0 14.7k
GenzymeCorp 1 0 12.2k
SanfordCoRDS 9 1 12.2k
HealthyAmerica1 2 0 11.1k
scripnews 1 0 9.8k
MommyBeggiato 13 0 9.6k
ReginaHolliday 1 0 9.5k
UpliftingAth 13 5 9.1k
shwen 1 0 8.6k
BioPharmaJosh 1 0 8.3k
croakeyblog 1 0 7.5k
OIFoundation 6 2 7.1k
pharmaphorum 1 0 7k
friedah03 7 0 6.1k
mvennitti 31 5 6.1k
ACROhealth 6 3 5.9k
CureSarcoma 5 2 5.9k
AAPAorg 1 0 5.7k
EmesArmy 10 2 5.1k
KUhlendorf 20 16 4.9k
curetheprocess 6 11 4.8k
LeighFazzina 1 0 4.6k
Lilly_COI 2 0 4.5k
KMBTweets 1 0 4.3k
TrishaTorrey 1 0 4.3k
RfwrightLSL 1 0 4.2k
whadvocacy 3 0 4.1k
WhoTrendedIT 1 2 3.8k
JonAtPhRMA 3 0 3.6k
KimTweetsDC 39 4 3.6k
gsfoundation 2 0 3.3k
GCPworks 1 0 3.3k
rv_rikard 2 0 3.2k
eperlste 2 0 3.2k
MSactivist 2 0 3k
chastongordon 10 1 3k
zeighami 23 7 2.4k
FMDAdvocate 7 12 2.4k
jnfuhrman 3 0 2.3k
FMDChat 3 0 2.2k
collabchem 5 2 2.2k
KickALS 6 2 2.1k
ScripDonnaDC 2 0 2k
Strangely_T1 1 0 2k
lanihashimoto 8 3 1.9k
WWFHNC 5 3 1.9k
GradyAtPhRMA 12 0 1.8k
healthhashtags 1 3 1.8k
FMDartery 4 1 1.8k
StephanieCHicks 19 4 1.7k
RareAdvocates 5 3 1.7k
LoveEire4eva 1 0 1.6k
tmlfox 1 0 1.6k
MeriLizzie 1 0 1.6k
TEAMCUREALS 1 0 1.6k
lynnwms 1 0 1.5k
HeartSisters 1 0 1.5k
WendyKovitz68 1 0 1.5k
cartestdrivers 1 0 1.5k
ConsanoMolly 2 0 1.5k
AnnBartlett 1 0 1.4k
Durhane 3 1 1.4k
CDKL5USA 12 0 1.3k
weworkforhealth 2 3 1.3k
PreetAtPhRMA 12 0 1.2k
kujakupoet 1 0 1.1k
sharonfterry 1 1 1k
targetcancer 6 1 990
Dan_Seaton 9 2 961
Pamskid 1 0 941
iBIO_John 2 0 902
planterofhope 9 2 898
CaAccess 3 1 891
shangaur 14 2 882
tgrom 1 0 836
CMTASTAR 1 0 820
LucysLoveBus 1 0 754
KirstenWalters 1 0 674
TabbyMitchell 6 0 654
4KidsCancerTx 1 0 645
Foot_Drop 3 2 645
PAWWFH 1 0 640
FKHealth 1 0 493
DrFalsetti 1 0 485
Gil_Bashe 1 0 482
Marinines40 1 0 466
izjustsayin 1 0 448
premierresearch 2 0 444
Aleychuly 1 0 439
HOPn2light 1 0 427
incrystalskin 3 1 411
AmanKhanna 1 0 399
ekeeleymoore 1 0 389
myvotefactor 1 0 389
HealthyTN 7 1 367
GlobalEpi 8 4 344
710dot9 1 0 342
KaelanAtPhRMA 1 1 316
SirenInteract 5 0 269
seeinsepia 24 2 258
jenniferA86 1 0 257
HoosiersWFH 1 0 242
vlmerker 2 0 240
pxe 1 0 230
cchen7 1 0 223
susanders 1 0 202
trialcard 1 0 198
RAINOklahoma 1 0 196
jocelynulrich 4 0 188
ProfAmyE 1 0 183
JJB4CURE 1 0 162
richadcock 2 0 156
FibroAndPain 1 0 155
PatientAccessFL 2 0 154
RoryLuepton 1 0 152
scweiss2001 1 0 151
ErickaFelice 1 0 137
AsadAmna 1 0 120
noahs_hope1 1 0 112
StoryALS 1 0 109
PA_Medicare 1 0 108
paulamarela 1 0 91
LizAtPhRMA 1 0 83
PharmaMKTnet 2 0 80
MedRXFL 2 1 78
hofelicha 1 0 76
EhlersRita 1 0 74
generoom 1 0 62
LisaGulledge 1 0 48
miracleoflife4 1 0 37
MRANCalifornia 3 0 36
amandabchesley 1 0 33
croissantbrain 1 0 30
thedanbednarik 1 0 28
JFCConsultants 1 1 20
AntibodyAndy 1 0 18
TamaraLynnViney 1 0 16
MarjorieCross 1 0 13
chano812 1 0 9
ZHeatherChamp 4 0 4
AllianceforCryo 2 0 2
LeavUrImge2FDP 2 0 2
RyanBethencourt 1 0 1
tommyashe10 1 0 1
PinkSheetDenise 1 0 1

tweets timeline Information

A full list of all tweets in this report, in reverse chronological order (newest first). This list includes timestamps.

Oct 18, 2013 at 5:27pm UTC

premierresearch
@SDFatPhRMA Definitely @ us when it's Storified. We want 2 read...but also share. Great stuff during #RarePOV. Can't wait 4 the next one!
SDFatPhRMA
@PinkSheetDenise In the meantime, you can search #RarePOV & select view ALL. We planned for 30 minutes and went past an hour!
SDFatPhRMA
@PinkSheetDenise Yes! We're reordering the #RarePOV Tweets in Storify so they make more sense which takes longer.
PinkSheetDenise
@SDFatPhRMA Will you be archiving/storifying #RarePOV for those who missed it?
SDFatPhRMA
ICYMI: Great infographic on #narcolepsy shared by @RemRunner in #RarePOV Tweetchat yesterday julieflygare.com/narcolepsy-inf… #hcsm
SDFatPhRMA
Still basking in the great response to the #RarePOV Tweetchat yesterday. We trended nationally! And the conversations seem to be continuing.
ZHeatherChamp
@SDFatPhRMA Wow! I would have loved to be a part of that! Will there be another one in the future? #rarepov
SDFatPhRMA
RT @KickALS: Thanks to @SDFatPhRMA for an important conversation for those w #ALS and #RarePOV's yesterday.
mvennitti
@JonAtPhRMA #raredisease advocates r powerhouses 4 change & reform but those "in power" should take responsibility. Get serious! #RarePOV
mvennitti
@Neil_Rubenstein This is not rocket science. Find the leaders, the voices and make change happen. Don't let bureaucracy get in way@#RarePOV
alsadvocacy
RT @KickALS: Thanks to @SDFatPhRMA for an important conversation for those w #ALS and #RarePOV's yesterday.
mvennitti
Is #raredisease as important as Patient care for 1 in 10 Americans? #PhRMA #RarePOV TweetChat · syoon | @scoopit sco.lt/5MtR0D
KickALS
Thanks to @SDFatPhRMA for an important conversation for those w #ALS and #RarePOV's yesterday.
shangaur
@SDFatPhRMA Thank you for hosting a fantastic event! #RarePOV
CCatPhRMA
ICYMI: @PhRMA held it's 1st Twitter chat yesterday. @SDFatPhRMA moderated a chat about #raredisease. Catch up at #rarePOV.
GenzymeCorp
Some great insights on the #RarePOV chat yesterday! So bummed we couldn't make it! @SDFatPhRMA
zeighami
RT @FasterCures: #RarePOV #tweetchat proving there are major challenges & blocks in road 2 cures. B part of the solution at #P4C2013 http:/…
vlmerker
@Neil_Rubenstein Whoops, I should have been clearer - I don't have NF, but I work at an neurofibromatosis clinic and research it #rarePOV
richadcock
RT @RareDiseases: .@SDFatPhRMA Q1: Change the mindset; Watch for zebras #raredisease #RarePOV
richadcock
RT @SDFatPhRMA: Patient registries & natural history studies can very be helpful to #biopharma cos interested in #raredisease #RarePOV
SDFatPhRMA
ICYMI (Released in April): Report finds significant economic & psycho-social impact of #raredisease rarediseaseimpact.com #RarePOV
croissantbrain
Tessa @croissantbrain over 4 years ago
RT @AfternoonNapper: Frankly I'm rather tired of the #zebra mentality. I'm not a freak; I'm a patient w/ needs like any other. #RarePOV
generoom
RT @StephanieCHicks: Dr's that understand their knowledge and respect patients knowledge=a great relationship. #RarePOV
ErickaFelice
RT @AfternoonNapper: Wonder how many #raredisease pts are too busy being pts to be advocates... #RarePOV
jnfuhrman
RT @FasterCures: Q5 #RarePOV social media provides perfect platform 2 share #patient stories and make them relatable http://t.co/vaUUN4kt1G…
Neil_Rubenstein
@vlmerker My wife has NF as well. She was diagnosed around 5 yrs. old after taking a fall and being in a coma for a bit #RarePOV
SDFatPhRMA
@ZHeatherChamp sorry you missed it! Great dialogue on #raredisease. Search for #RarePOV & select ALL so you see everyone's insights.
SDFatPhRMA
@ZHeatherChamp #RarePOV was #hashtag for #raredisease Tweetchat today. Means rare Point of View. Check out the great discussion!
lynnwms
RT @HealthyTN: @lynnwms FYI tweet chat going on re: #raredisease with @SDFatPhRMA. Follow #rarePOV to join in. cc @ACSCAN
ZHeatherChamp
@vlmerker Can you help me? What is #RarePOV ?
KirstenWalters
RT @AfternoonNapper: Wonder how many #raredisease pts are too busy being pts to be advocates... #RarePOV
seeinsepia
“@kevinmd: We need health care instead of disease management http://t.co/x9AO03yO2m” #RarePOV
collabchem
#RarePOV tried putting all LSDs in one place to follow them in #ODDT hope to see cross fertilization of ideas. Share news, structures, data
collabchem
RT @AfternoonNapper: Perhaps quelling the idea that #raredisease is so rare would help speed Dx. Collectively we're not rare. #RarePOV
SDFatPhRMA
I agree! Great enthusiasm! RT @Foot_Drop: Interesting chat #RarePOV very encouraging to see #raredisease interest by so many
710dot9
RT @AfternoonNapper: Wonder how many #raredisease pts are too busy being pts to be advocates... #RarePOV
SDFatPhRMA
#RarePOV RT @GradyAtPhRMA: @SDFatPhRMA Better share and circulate common messages. Repetition from multiple sources drives home the point
SDFatPhRMA
RT @Neil_Rubenstein: RT @NHCouncil @PhRMA @SDFatPhRMA Thanks for organizing #RarePOV! Great energy and ideas.
SDFatPhRMA
I AM IN! RT@CCatPhRMA: Thank you #raredisease community for the great #rarePOV chat today. Let's do it again! Right, @SDFatPhRMA?”
SDFatPhRMA
RT @CCatPhRMA: We'll have a wrap up and Storify that we can share with #rarePOV tomorrow. Thanks again for all of your participation. Than…
SDFatPhRMA
#rarePOV MT @CMTASTAR: We use Social Media to target specific patient pops & reach them with messages that will be meaningful to them.
SDFatPhRMA
RT @alsadvocacy: @SDFatPhRMA Enjoying rehashing the hashtag #RarePOV & seeing the comments. Great stuff. Thanks for doing. Next time I hop…
SDFatPhRMA
@alsadvocacy I hope so too. You were there in spirit, I know! Thanks for letting #als community know about #RarePOV chat.
vlmerker
Can't believe I missed the #RarePOV tweetchat, a great rare disease discussion. will join next time to add my neurofibromatosis perspective!
mvennitti
@PracticalWisdom Thanks for your RT today for #raredisease #rarepov Always appreciate your support. You still on the #MedX high?
mvennitti
Exciting day for #raredisease as communities, pts, #hcsm & #PhRMA shared ideas. #RarePOV Tweet Chat storify.com/phrma/phrma-ra… via @phrma
StoryALS
RT @RemRunner: @SDFatPhRMA We may be RARE, but we've got ROAR! My new #raredisease motto. :-) #RarePOV http://t.co/Fmm3TJRbXt
mvennitti
RT @collabchem: #RarePOV many patient advocates are more than that do more with less wear many hats, social network lessons there beyond #r
collabchem
.. also have enormous strength, resourcefulness, ability to breakdown barriers, think differently, see connections others missed, #RarePOV
mvennitti
@proppsolutions check out the tweetchat from today #rarePOV. Wish you could have attended.
PracticalWisdom
RT @healthhashtags: New Health Hashtag: #RarePOV bit.ly/1cyMA3w #hcsm "Rare Disease"
PracticalWisdom
RT @teaminspire: Hi all at #Rarepov, John Novack here from Inspire, online peer-to-peer support communities for patients & caregivers http:…
HeartSisters
RT @AfternoonNapper: Wonder how many #raredisease pts are too busy being pts to be advocates... #RarePOV
ProfAmyE
RT @mvennitti: Q4 Let's invest time in #raredisease tweetchats inviting #pharma, #biotechs, patients & orgs. #Rarepov
mvennitti
@teaminspire Thanks John for attending the chat today for #raredisease. #rarepov
mvennitti
@AfternoonNapper Exactly. Connecting the dots is not a game played well for #raredisease. #rarepov
JJB4CURE
RT @collabchem: #RarePOV many patient advocates are more than that do more with less wear many hats, social network lessons there beyond #r
mvennitti
@RareDiseases #rarepatients don't always look any different than average person just w/many unexplained & complicated problems. #RarePOV
mvennitti
@Durhane @SDFatPhRMA Are these initiatives just coming into effect? #RarePOV
mvennitti
@seeinsepia @SDFatPhRMA Sarah are you referring to yourself? #RarePOV

Oct 18, 2013 at 12:00am UTC

collabchem
#RarePOV many patient advocates are more than that do more with less wear many hats, social network lessons there beyond #rarediseases #oddt
mvennitti
@curetheprocess Bringing live webcast to patients & patient advocates is necessary step. #RarePOV
alsadvocacy
RT @NHCouncil: A5: #RarePOV is great example of social media dialog to raise awareness and collaborate. Q: how to convert conversation to a…
alsadvocacy
RT @FasterCures: Q3 #RarePOV Help the FDA decide what is “effective” for a #patient. Sometimes effective is quality of life improvement, n…
alsadvocacy
@SDFatPhRMA Enjoying rehashing the hashtag #RarePOV & seeing the comments. Great stuff. Thanks for doing. Next time I hope I can b there!
mvennitti
@AfternoonNapper Now do we find those who are not on #SoMe and help them? #RarePOV
mvennitti
@FasterCures Getting a treatment is foremost. #RarePOV
mvennitti
@RemRunner Perhaps not broken just not propely established. Raising bar for equal attention 4 #raredisease patients is now a must! #RarePOV
DrFalsetti
RT @RareDiseases: Q5 Gathered stats on FB about diagnosis, 20% #raredisease patients took 10+ years #RarePOV
SDFatPhRMA
RT @FasterCures: Thanks 4 a great first #tweetchat @SDFatPhRMA! #RarePOV If you haven't make sure 2 register for #P4C2013 http://t.co/hxBdn…
IAmBiotech
RT @Dan_Seaton: #Raredisease advocates id priorities to discuss in @PhRMA’s TweetChat onphr.ma/1e6MOzq Follow #RarePOV today at 4pm ET
SDFatPhRMA
And thanks to @twitter for blocking me from Tweeting while I was hosting #RarePOV Tweetchat. Apparently there's hourly limit on # of Tweets
ScripDonnaDC
RT @SDFatPhRMA: Delayed THANK YOU for amazing engagement & participation by in #RarePOV. Enjoyed the discussion & hope it continues. #rared
scripnews
RT @SDFatPhRMA: Delayed THANK YOU for amazing engagement & participation by in #RarePOV. Enjoyed the discussion & hope it continues. #rared
SDFatPhRMA
Delayed THANK YOU for amazing engagement & participation by in #RarePOV. Enjoyed the discussion & hope it continues. #raredisease
SDFatPhRMA
RT @FasterCures: Q2 #RarePOV It's important 2 create a network of #patients so that #researchers have easy to access resources
SDFatPhRMA
@SanfordCoRDS Thanks for joining #RarePOV ! When is your next #raredisease Tweetchat?
SDFatPhRMA
@FMDAdvocate It is important to help @US_FDA understand patient perspective on benefit risk for when there is potential new therapy #RarePOV
MarjorieCross
“@HealthyAmerica1: In 5 minutes: #Raredisease tweetchat in an hour! Follow #RarePOV to join the discussion!”
SDFatPhRMA
@CDKL5USA @targetcancer Me too! Conference last week was great start for advocacy organization & #biopharma companies to connect #RarePOV
PracticalWisdom
RT @mvennitti: Q4 Let's invest time in #raredisease tweetchats inviting #pharma, #biotechs, patients & orgs. #Rarepov
SDFatPhRMA
@GlobalEpi Thanks for participating in #RarePOV! Important to have all stakeholders in the #raredisease dialogue
SDFatPhRMA
@AfternoonNapper Always important to keep in mind. Need ways to engage patients & caretakers efficiently w/ minimal time demands #RarePOV
SDFatPhRMA
@FasterCures #TimeEqLives a great example of utilizing social media to tell patient stories #RarePOV
SDFatPhRMA
@planterofhope Agree, that is critically important. Must educate before you can activate. Thanks for joining #RarePOV!
SDFatPhRMA
@RemRunner @KimTweetsDC @UniteNarcolepsy You did a rockstar job unifying the #narcolepsy community for the #FDA PFDD initiative! #rarePOV
ZHeatherChamp
@RemRunner Hi! Can I jump in on this tweet? What is #RarePOV? Thank you!
ReginaHolliday
RT @FasterCures: Q2 #RarePOV #Rarediseases make up about 1/3 of newly @US_FDA approved drugs. The may approvals B there but the price tags …
Dan_Seaton
@SDFatPhRMA thanks for hosting #RarePOV chat! Great "seeing" you, @KUhlendorf @CCatPhRMA & @PreetAtPhRMA
SDFatPhRMA
@RemRunner @zeighami @RareAdvocates RDLA is a great resource. I will introduce you via email. Love to keep momentum of #rarePOV!
SDFatPhRMA
@Dan_Seaton So true! Thanks for joining the #RarePOV chat!
SDFatPhRMA
@chastongordon Very glad you could join us, and for your key question - how do we move from talk to action to get results? #RarePOV
SDFatPhRMA
@UpliftingAth Thanks for joining #RarePOV and for all of the work you do to raise awareness and support for the #raredisease community!
SDFatPhRMA
@FMDAdvocate Glad you could join us to share your #RarePOV. Thank you!
SDFatPhRMA
@RemRunner Thanks for bringing your insight & enthusiasm to #RarePOV Hear us ROAR indeed!
SDFatPhRMA
@mvennitti Thank you for joining and sharing your #RarePOV despite a busy week!
SDFatPhRMA
@lanihashimoto Yes! Should have it tomorrow. Thank you for sharing your #RarePOV!
tommyashe10
@RareDiseases @RareDiseases: Investors, companies bullish on orphan products #raredisease #RarePOV reference @ACTregmed Stargardt's treatmnt
seeinsepia
@SDFatPhRMA You're welcome! Thanks for hosting #RarePOV
SDFatPhRMA
@seeinsepia @shangaur Glad to see the discussion continuing from #RarePOV Tweetchat. Thank you both for participating!
lanihashimoto
RT @CCatPhRMA: We'll have a wrap up and Storify that we can share with #rarePOV tomorrow. Thanks again for all of your participation. Than…
CMTASTAR
@SDatPhRMA Thank you for hosting today's chat on #rarediseases! We are more inspired than ever as we work towards a cure for CMT. #RarePOV
AllianceforCryo
@SanfordCoRDS @SDFatPhRMA Last 3 yrs #raredisease on #SoMe has exploded now we need to implement ideas into action. #RarePOV
eperlste
@StephanieCHicks sorry, I thought I could make it but I had a late lunch I couldn't resched! Will catch up on #rarePOV now tho
AsadAmna
RT @FasterCures: Foundations are important for connecting basic #research and industry. Knowledge generation + #cures development #RarePOV
AllianceforCryo
@UpliftingAth Your work has been so impressive but we do need a platform 4 #raredisease and tweetchat is gr8 beginning for us. Thx #rarePOV
CCatPhRMA
We'll have a wrap up and Storify that we can share with #rarePOV tomorrow. Thanks again for all of your participation. Thanks @SDFatPhRMA
LucysLoveBus
Less than 4% of funding for cancer research goes to childhood cancers, some of the rarest and unexplainable #RarePOV
chano812
RT @AfternoonNapper: Frankly I'm rather tired of the #zebra mentality. I'm not a freak; I'm a patient w/ needs like any other. #RarePOV
premierresearch
RT @KUhlendorf: #RarePOV. Thanks to all. Here's to building on the 13 orphan drugs approved by @US_FDA for #rarediseases in 2012.
Neil_Rubenstein
RT @mvennitti @SirenInteract Looking forward to documentary. #RarePOV
Neil_Rubenstein
RT @SirenInteract Great conversation with insights for #raredisease #RarePOV
iCareAware
#health #healthcare #fail » RT @RareDiseases Q5 Gathered stats on FB about diagnosis, 20% #raredisease patients took 10+ years #RarePOV
StephanieCHicks
@seeinsepia @iCareAware less pain. more smiles of joy. Different for all. Time is now, not a given. I let my DD be a "normal kid" #RarePOV
SirenInteract
Great conversation with insights for #raredisease #RarePOV
RareAdvocates
RDLA @RareAdvocates over 4 years ago
@KimTweetsDC @zeighami @RemRunner Petitions are mostly used to collect information - direct email to your MOC is more effective #RarePOV
SirenInteract
RT @incrystalskin: Q5 Our hope is that we can raise awareness about RD and EB by shining a light on it in our documentary. #RarePOV
iCareAware
RT @seeinsepia: #RarePOV RD PTs - What is your definition of Quality of Life?
TamaraLynnViney
Thanks for all the great work #RarePov! From us here at: To bring awareness to Castlemans Disease
teaminspire
RT @FMDartery: Thanks @PhRMA for bringing together #raredisease advocates today #RarePOV
RemRunner
Thank you @PhRMA @SDFatPhRMA for awesome discussion! We need a follow-up chat. :-) Hear us ROAR! #RarePOV
StephanieCHicks
RT @FMDAdvocate: Hope to see #raredisease come together again soon! #RarePOV #FMDAware
iCareAware
RT @SDFatPhRMA: Q1 some great points! The work of advocacy organizations & individual advocates to raise awareness is important #RarePOV
FMDAdvocate
Hope to see #raredisease come together again soon! #RarePOV #FMDAware
StephanieCHicks
RT @RareDiseases: RT @StephanieCHicks: Dr's that understand their knowledge and respect patients knowledge=a great relationship. #RarePOV
Dan_Seaton
RT @KUhlendorf: #RarePOV. Thanks to all. Here's to building on the 13 orphan drugs approved by @US_FDA for #rarediseases in 2012.
SanfordCoRDS
RT @PhRMA: Still @SDFatPhRMA... Thank you all for joining #RarePOV Tweetchat on #raredisease!
TabbyMitchell
RT @curetheprocess: Q3: bit.ly/H6qV7C FDA public workshop Jan 6-7, 2014 #RarePOV
seeinsepia
RT @Neil_Rubenstein: RT @PreetAtPhRMA What a great engaging conversation with members of the #raredisease community! #RarePOV
incrystalskin
Thank you @PhRMA we've learned so much #RarePOV
RemRunner
Are other #raredisease communities having insurance reimbursement issues for "off label" pediatric use? #RarePOV julieflygare.com/understanding-…
UpliftingAth
@PhRMA A5 utilize a platform like this to organize actual events and bring the rare disease community together! #RarePOV
TabbyMitchell
RT @GlobalGenes: Great power in numbers of educated advocates working together towards a common goal in an easy to access and cost-effectiv…
KimTweetsDC
RT @Neil_Rubenstein: TY! RT @KimTweetsDC RT @curetheprocess: Thank you for such an informative & lively conversation! #RarePOV
TabbyMitchell
RT @RareDiseases: Q5 Gathered stats on FB about diagnosis, 20% #raredisease patients took 10+ years #RarePOV
TabbyMitchell
RT @RareDiseases: RT @StephanieCHicks: Dr's that understand their knowledge and respect patients knowledge=a great relationship. #RarePOV
Neil_Rubenstein
RT @PreetAtPhRMA What a great engaging conversation with members of the #raredisease community! #RarePOV
CCatPhRMA
Thank you #raredisease community for the great #rarePOV chat today. Let's do it again! Right, @SDFatPhRMA?
PreetAtPhRMA
What a great engaging conversation with members of the #raredisease community! #RarePOV
FMDartery
Thanks @PhRMA for bringing together #raredisease advocates today #RarePOV
incrystalskin
Q5 Our hope is that we can raise awareness about RD and EB by shining a light on it in our documentary. #RarePOV
chastongordon
Thanks a million to @SDFatPhRMA @PhRMA and all else for the great tweetchat today on #RarePOV #raredisease More than you can imagine!
TabbyMitchell
RT @EmesArmy: A5 Reach out to #rare peers & teach them to use social media. Teach them to teach. Teach them to tweet & post. #RarePOV
Dan_Seaton
Q6 @PhRMA Advocates need to help stakeholders take action: make it easy for them w/eg petitions, contact Congress form #raredisease #RarePOV
StephanieCHicks
RT @Neil_Rubenstein: RT @NHCouncil @PhRMA @SDFatPhRMA Thanks for organizing #RarePOV! Great energy and ideas.
seeinsepia
#RarePOV RD PTs - What is your definition of Quality of Life?
PhRMA
RT @KUhlendorf: #RarePOV. Thanks to all. Here's to building on the 13 orphan drugs approved by @US_FDA for #rarediseases in 2012.
seeinsepia
@shangaur The PT should get to determine the desired treatment outcomes+define QOL. Advocacy should not be required for treatment #RarePOV
KUhlendorf
#RarePOV. Thanks to all. Here's to building on the 13 orphan drugs approved by @US_FDA for #rarediseases in 2012.
Neil_Rubenstein
TY! RT @KimTweetsDC RT @curetheprocess: Thank you for such an informative & lively conversation! #RarePOV
PhRMA
RT @FasterCures: Thanks 4 a great first #tweetchat @SDFatPhRMA! #RarePOV If you haven't make sure 2 register for #P4C2013 http://t.co/hxBdn…
Neil_Rubenstein
MT @StephanieCHicks My kid has 6 #raredisease some rare-some just not enough awareness. This mama bear roars/bites @ times #RarePOV
KimTweetsDC
RT @curetheprocess: Thank you for such an informative & lively conversation! #RarePOV
KimTweetsDC
RT @GlobalEpi: Thanks @SDFatPhRMA @PhRMA for an inspiring and stimulating tweetchat on #rarediseases #RarePOV
KimTweetsDC
RT @RareDiseases: Q5 Gathered stats on FB about diagnosis, 20% #raredisease patients took 10+ years #RarePOV
KimTweetsDC
RT @StephanieCHicks: Dr's that understand their knowledge and respect patients knowledge=a great relationship. #RarePOV
PhRMA
RT @curetheprocess: Thank you for such an informative & lively conversation! #RarePOV
RareDiseases
NORD @RareDiseases over 4 years ago
RT @StephanieCHicks: Dr's that understand their knowledge and respect patients knowledge=a great relationship. #RarePOV
EmesArmy
RT @NHCouncil: @PhRMA @SDFatPhRMA Thanks for organizing #RarePOV! Great energy and ideas.
curetheprocess
Thank you for such an informative & lively conversation! #RarePOV
PhRMA
RT @EmesArmy: A5 Reach out to #rare peers & teach them to use social media. Teach them to teach. Teach them to tweet & post. #RarePOV
EmesArmy
A5 Reach out to #rare peers & teach them to use social media. Teach them to teach. Teach them to tweet & post. #RarePOV
GlobalEpi
Thanks @SDFatPhRMA @PhRMA for an inspiring and stimulating tweetchat on #rarediseases #RarePOV
StephanieCHicks
RT @SDFatPhRMA: Q5: how can we leverage social media to raise awareness of #raredisease, collaborate & move bar on policy issues? #RarePOV
Neil_Rubenstein
RT @NHCouncil @PhRMA @SDFatPhRMA Thanks for organizing #RarePOV! Great energy and ideas.
StephanieCHicks
My kid has 6 #raredisease some rare-some just not enough awareness.I will never be silent.This mama bear roars & bites when needed #RarePOV
friedah03
RT @RareDiseases: Q5 Gathered stats on FB about diagnosis, 20% #raredisease patients took 10+ years #RarePOV
NHCouncil
@PhRMA @SDFatPhRMA Thanks for organizing #RarePOV! Great energy and ideas.
PhRMA
Still @SDFatPhRMA... Thank you all for joining #RarePOV Tweetchat on #raredisease!
chastongordon
@PhRMA I think all of us want to take more action but don't know how. I love this-strength in numbers - capitalize? #RarePOV #raredisease
KimTweetsDC
RT @FasterCures: Thanks 4 a great first #tweetchat @SDFatPhRMA! #RarePOV If you haven't make sure 2 register for #P4C2013 http://t.co/hxBdn…
EmesArmy
RT @RareDiseases: Q5 Gathered stats on FB about diagnosis, 20% #raredisease patients took 10+ years #RarePOV
FasterCures
Thanks 4 a great first #tweetchat @SDFatPhRMA! #RarePOV If you haven't make sure 2 register for #P4C2013 partneringforcures.org
friedah03
I heard! MT @KimTweetsDC: Q5: #Narcolepsy comm rocked @ 9/24/13 #patientfocused @US_FDA mtg! Highest participation rates in series! #RarePOV
shangaur
@seeinsepia Absolutely! I think QOL, PT autonomy, and data sharing through #crowdsourcing are intimately intertwined. #RarePOV
CCatPhRMA
RT @PhRMA: Last Q: building on what @chastongordon asked, what action can we take to move from Tweeting to action on #raredisease? #RarePOV
Neil_Rubenstein
holy grail RT @StephanieCHicks Dr's that understand their knowledge and respect patients knowledge=a great relationship. #RarePOV
CCatPhRMA
Hard to cut through noise, but worth it. MT @friedah03: @RemRunner Have seen good results from online petitions but misuse as well #RarePOV
RareDiseases
NORD @RareDiseases over 4 years ago
Q5 Gathered stats on FB about diagnosis, 20% #raredisease patients took 10+ years #RarePOV
Dan_Seaton
Great idea! MT @RareAdvocates Q5 @SDFatPhRMA Use Twitter & Facebook 2 thank Mem. of Congress when they support #RareDisease Issues #RarePOV
StephanieCHicks
Dr's that understand their knowledge and respect patients knowledge=a great relationship. #RarePOV
PhRMA
Last Q: building on what @chastongordon asked, what action can we take to move from Tweeting to action on #raredisease? #RarePOV
Neil_Rubenstein
RT @EmesArmy RT @SDFatPhRMA: Q1 some gr8 points! The work of advocacy orgs & individuals 2 raise awareness is important #RarePOV
GlobalGenes
RT @RareAdvocates: Q5 @SDFatPhRMA Use Twitter & Facebook to thank Members of Congress when they support #RareDisease Issues #RarePOV
GlobalGenes
@RemRunner @RareAdvocates has been a great partner to work with on these legislative advocacy issues affecting #raredisease. #RarePOV
UpliftingAth
RT @RareAdvocates Q5 @SDFatPhRMA Use Twitter & Facebook to thank Members of Congress when they support #RareDisease Issues #RarePOV
EmesArmy
RT @SDFatPhRMA: Q1 some great points! The work of advocacy organizations & individual advocates to raise awareness is important #RarePOV
KimTweetsDC
RT @RareAdvocates: Q5 @SDFatPhRMA Use Twitter & Facebook to thank Members of Congress when they support #RareDisease Issues #RarePOV
EmesArmy
RT @PhRMA: Great discussion on #rarediseases from a number of groups happening now. Follow #rarePOV to join in
RemRunner
@chastongordon @SDFatPhRMA Thank you! I have #narcolepsy, so fun mottos keep me motivated towards making change. #RarePOV
seeinsepia
@SDFatPhRMA We are missing the human side: We live with our RD, not for it. RD PTs want full quality lives. Less time in offices. #RarePOV
FMDartery
#Zebras unite we share hopes & frustrations. #RarePOV
EmesArmy
RT @GlobalGenes: Great power in numbers of educated advocates working together towards a common goal in an easy to access and cost-effectiv…
chastongordon
RT @RemRunner: @SDFatPhRMA We may be RARE, but we've got ROAR! My new #raredisease motto. :-) #RarePOV http://t.co/Fmm3TJRbXt
friedah03
@RemRunner Have seen good results from online petitions but mis-use as well #RarePOV
PhRMA
This is @sdfatphrma locked out of my account! Thank you all for sharing your #rarePOV. Great input & interaction!
KimTweetsDC
@zeighami @RemRunner @RareAdvocates I've never seen them amount to much action or attention beyond the community signing them. #RarePOV
RareAdvocates
RDLA @RareAdvocates over 4 years ago
Q5 @SDFatPhRMA Use Twitter & Facebook to thank Members of Congress when they support #RareDisease Issues #RarePOV
Neil_Rubenstein
@zeighami @RemRunner @RareAdvocates Online petition have some use IMO 4 community awareness more than anything else #rarepov
Dan_Seaton
RT @NHCouncil: A5: #RarePOV is great example of social media dialog to raise awareness and collaborate. Q: how to convert conversation to a…
CCatPhRMA
Moderation of #rarePOV will be moving over to the @PhRMA handle while @SDFatPhRMA solves her technical issues.
RemRunner
.@zeighami Thank you for your input! I've heard GREAT things about @RareAdvocates but haven't worked with them directly. #RarePOV
KimTweetsDC
RT @RemRunner: @SDFatPhRMA We may be RARE, but we've got ROAR! My new #raredisease motto. :-) #RarePOV http://t.co/Fmm3TJRbXt
KimTweetsDC
RT @CCatPhRMA: Just proof that @SDFatPhRMA is working hard on today's Twitter chat. The picture of intensity here at #rarePOV http://t.co/s…
Neil_Rubenstein
RT @GlobalEpi RT @RemRunner: @SDFatPhRMA We may b RARE, but we've got ROAR! My new #raredisease motto. :-) #RarePOV
seeinsepia
@shangaur That sounds nice, but I disagree. The best Rx improves QOL and Patient Autonomy. We are more than our disease. #RarePOV
FasterCures
RT @RemRunner: @SDFatPhRMA We may be RARE, but we've got ROAR! My new #raredisease motto. :-) #RarePOV http://t.co/Fmm3TJRbXt
kujakupoet
RT @KimTweetsDC: #RarePOV demonstrated by #narcolepsy community through #patientfocused survey w/ 1700 responses & growing! http://t.co/l7t…
CCatPhRMA
Just proof that @SDFatPhRMA is working hard on today's Twitter chat. The picture of intensity here at #rarePOV ow.ly/i/3sgX3
GlobalEpi
RT @RemRunner: @SDFatPhRMA We may be RARE, but we've got ROAR! My new #raredisease motto. :-) #RarePOV http://t.co/Fmm3TJRbXt
KimTweetsDC
RT @WhoTrendedIT: How about that ? @PhRMA and @FasterCures are responsible for trending #RarePOV in America. I make no mistakes.
StephanieCHicks
RT @GlobalGenes: Great power in numbers of educated advocates working together towards a common goal in an easy to access and cost-effectiv…
StephanieCHicks
RT @Neil_Rubenstein: MT @FasterCures #RarePOV sparking a meaningful conversation/partnership is easier w/social. #MedicalResearch #hcsm com…
RemRunner
@SDFatPhRMA We may be RARE, but we've got ROAR! My new #raredisease motto. :-) #RarePOV http://t.co/Fmm3TJRbXt
zeighami
@RemRunner I am not sure if online petitions matter. We've focused on working through @RareAdvocates for leg. advocacy. #RarePOV
FasterCures
RT @shangaur: @seeinsepia One of the best Rx's a doc can give PTs is one that empowers them to share their story and their data. #RarePOV
KimTweetsDC
Q5: #Narcolepsy community rocked the house at 9/24/13 #patientfocused @US_FDA mtg! Highest participation rates yet in series! #RarePOV
SirenInteract
@UpliftingAth @SDFatPhRMA Yes, reach the unaffected and let them know we're all affected in one way or another. #RarePOV #raredisease
mvennitti
Sorry I am missing this fabulous conversation, great initiative for #raredisease. Thank you and hope to join in the next chat. #rarepov
collabchem
@AfternoonNapper #RarePOV #ODDT developed to help share ideas, bring information to patients and get scientists to collaborate. Plenty to do
FasterCures
RT @WhoTrendedIT: How about that ? @PhRMA and @FasterCures are responsible for trending #RarePOV in America. I make no mistakes.
shangaur
@seeinsepia One of the best Rx's a doc can give PTs is one that empowers them to share their story and their data. #RarePOV
seeinsepia
@shangaur @GeneticAlliance That's a problem for RD PTs. We want control+imput over our bodies and treatment like any other patient #RarePOV
TabbyMitchell
Q5 patients & fans are busy organizing & learning & often forget to do outreach to community @ #raredisease #rarepov
RemRunner
A5 Online petitions haven't been used too much in #narcolepsy community. Are #rarediease communities using these effectively? #RarePOV
gsfoundation
RT @GlobalGenes: Great power in numbers of educated advocates working together towards a common goal in an easy to access and cost-effectiv…
RareAdvocates
RDLA @RareAdvocates over 4 years ago
EveryLife partnering w NY patient orgs to host mixer 11/4 join RareDisease# Advocate group at #P4C2013 for invite. #RarePOV @curetheprocess
KimTweetsDC
RT @RemRunner: A5 We used a lot of social media to leverage #narcolepsy opportunity with FDA. @KimTweetsDC @UniteNarcolepsy #RarePOV I'd lo…
Neil_Rubenstein
Amen RT @friedah03 Q5 #Raredisease pts r supercharged.Use social media 2 educate,support,activate,diagnose,build community #RarePOV
shangaur
@seeinsepia PT may not control treatment course but can be empowered by their doc to control & share their data. #RarePOV @GeneticAlliance
StephanieCHicks
@Neil_Rubenstein Sometimes...I think that would be effective for many. At least I feel that way. Especially in ER's or with family #RarePOV
Neil_Rubenstein
MT @FasterCures #RarePOV sparking a meaningful conversation/partnership is easier w/social. #MedicalResearch #hcsm community rocks.
CCatPhRMA
Moment of technical Zen: @SDFatPhRMA is having technical difficulties. Ha. #RarePOV
UpliftingAth
@SDFatPhRMA A5 Use social media to engage people unaffected by #rarePOV Jack Hoffman's TD run has millions of views! ow.ly/pVrvF
friedah03
Q5 #Raredisease patients are supercharged. Use social media to educate, support, activate, diagnose, build community #RarePOV
seeinsepia
@NHCouncil Get the info to the decision makers. Information Based Decisions. Use SM to distribute new findings to PT and Docs #RarePOV
KimTweetsDC
RT @FasterCures: #RarePOV sparking a meaningful conversation or even partnership become easier via social. #MedicalResearch #hcsm community…
zeighami
@SDFatPhRMA This great piece by a Sanfilippo family got media by tying shutdown impact to research wistv.com/story/23606888… #RarePOV
SirenInteract
RT @GlobalGenes: Great power in numbers of educated advocates working together towards a common goal in an easy to access and cost-effectiv…
GlobalGenes
RT @NHCouncil: A5: #RarePOV is great example of social media dialog to raise awareness and collaborate. Q: how to convert conversation to a…
iCareAware
RT @zeighami: Family suffering from #rarePOV can be immense yet solutions simple. We need accelerated appvl pathway for speed.
iCareAware
RT @GlobalGenes: Great power in numbers of educated advocates working together towards a common goal in an easy to access and cost-effectiv…
StephanieCHicks
@GlobalGenes That is what I LOVE about you! Not about one disease, but all. Not about money, but patient care. #RarePOV
EmesArmy
#RarePOV Lots & lots of organizations simply don't understand social networking or IT & don't use it. Q5
CCatPhRMA
Always the key. RT @chastongordon: Question of the day @NHCouncil - How to convert conversation to action? #RarePOV #RareDisease
teaminspire
Q5 Our rare disease communities' main topics are: finding treatment options, exchanging practical advice, giving/getting empathy. #RarePov
seeinsepia
@shangaur @SDFatPhRMA How is the PT included in the collaboration? What control are they given over their treatment? #RarePOV #raredisease
FasterCures
#RarePOV sparking a meaningful conversation or even partnership become easier via social. #MedicalResearch #hcsm community rocks.
FMDAdvocate
@NHCouncil A5 if only we knew that answer. #RarePOV
iCareAware
RT @NHCouncil: A5: #RarePOV is great example of social media dialog to raise awareness and collaborate. Q: how to convert conversation to a…
RemRunner
A5 We used a lot of social media to leverage #narcolepsy opportunity with FDA. @KimTweetsDC @UniteNarcolepsy #RarePOV I'd love to share!
KUhlendorf
RT @GlobalGenes: Great power in numbers of educated advocates working together towards a common goal in an easy to access and cost-effectiv…
planterofhope
RT @GlobalGenes: Great power in numbers of educated advocates working together towards a common goal in an easy to access and cost-effectiv…
StephanieCHicks
@RareDR Gov't and pharma don't care where big money and fame are not attached. That's the simple truth. #RarePOV #raredisease
chastongordon
Question of the day @NHCouncil - How to convert conversation to action? #RarePOV #RareDisease
planterofhope
Q5 #RarePOV continue to educate legislators at county, state, and federal level. Have a constant loop of communication
mvennitti
RT @zeighami @SDFatPhRMA @afternoonnapper @us_fda I think that we can't be afraid of telling uncomfortable truths #RarePOV
Neil_Rubenstein
Q5. Basically we need to go where the patients are. I always say if skywriting is the best way to reach pts...so be it #RarePOV
zeighami
Family suffering from #rarePOV can be immense yet solutions simple. We need accelerated appvl pathway for speed.
GlobalGenes
Great power in numbers of educated advocates working together towards a common goal in an easy to access and cost-effective way. #RarePOV
StephanieCHicks
I love the idea @eperlste has for research. Get more done w/o big names! becomes passion over fame and money #raredisease #RarePOV
seeinsepia
@SDFatPhRMA My OI Dx resulted in an immediate Rx for Fosamax, not approved for #OI, no discussion of long term impacts #RarePOV #raredisease
SDFatPhRMA
RT @NHCouncil: A5: #RarePOV is great example of social media dialog to raise awareness and collaborate. Q: how to convert conversation to a…
planterofhope
Q5 #RarePOV can't link groups with differing agendas. Confuses audience
SDFatPhRMA
@mvennitti Absolutely! More conversations important to understanding challenges of drug dev & review process, & of being a patient #RarePOV
RareDR
#RarePOV Q5 - find patients and scientists extremely good at social media. They need to teach pharma, gov't how it is done.
Neil_Rubenstein
Q5. Discussions like these are gr8 but not enough. We need to leverage FB, Google+, private forums from pt orgs. #RarePov
planterofhope
Q5 #RarePOV one of the keys is to make sure that all collaborators are looking for same thing. Some grps not looking to look for treatment
SanfordCoRDS
RT @SDFatPhRMA: Q5: how can we leverage social media to raise awareness of #raredisease, collaborate & move bar on policy issues? #RarePOV
KimTweetsDC
RT @FasterCures: Q5 #RarePOV social media provides perfect platform 2 share #patient stories and make them relatable http://t.co/vaUUN4kt1G…
FasterCures
Q5 #RarePOV social media provides perfect platform 2 share #patient stories and make them relatable timeequalslives.org/yourstories.ht… #TimeEqLives
mvennitti
@allianceforcryo working on registry, research, non profit. Can this process be supported by #pharma? #Rarepov
SDFatPhRMA
RT @mvennitti: Q4 Let's invest time in #raredisease tweetchats inviting #pharma, #biotechs, patients & orgs. #Rarepov
CCatPhRMA
A5: More talking like this! #raredisease is lucky to have strong advocates like all of you and @SDFatPhRMA to keep convo alive! #rarePOV
NHCouncil
A5: #RarePOV is great example of social media dialog to raise awareness and collaborate. Q: how to convert conversation to action?
KUhlendorf
RT @RemRunner: A5 I'm all for collaboration. We are stronger together. #RarePOV
PreetAtPhRMA
RT @RemRunner: A5 I'm all for collaboration. We are stronger together. #RarePOV
SDFatPhRMA
RT @RemRunner: A5 I'm all for collaboration. We are stronger together. #RarePOV
SDFatPhRMA
RT @RareDiseases: Q5 Patients connect for global advocacy, such as on @RareConnect #RarePOV rareconnect.org
ekeeleymoore
RT @FasterCures: #RarePOV How do we encourage #biopharma to share control arm #data to make future #clinicaltrials more efficient?
KimTweetsDC
RT @zeighami: @SDFatPhRMA The questions need to be framed in simple ways. Policy is wonky. Needs to be accessible yet true. #RarePOV
RemRunner
A5 I'm all for collaboration. We are stronger together. #RarePOV
MommyBeggiato
RT @zeighami: @SDFatPhRMA Patients are getting together to advance treatments. Especially gene therapy #RarePOV
AfternoonNapper
RT @StephanieCHicks: @eperlste , where are you? We need your input! #raredisease #RarePOV
WhoTrendedIT
How about that ? @PhRMA and @FasterCures are responsible for trending #RarePOV in America. I make no mistakes.
StephanieCHicks
@eperlste , where are you? We need your input! #raredisease #RarePOV
RareDiseases
NORD @RareDiseases over 4 years ago
Q5 Patients connect for global advocacy, such as on @RareConnect #RarePOV rareconnect.org
KimTweetsDC
@zeighami @SDFatPhRMA @RareDiseases San Filippo community working with @sagebionetworks @wilbanks to pool data, gain insights. #RarePOV
shangaur
@seeinsepia Never taught to formally, but the training we receive on how to listen to all PTs forms the basis for collaboration. #RarePOV
iCareAware
RT @PhRMA: Great discussion on #rarediseases from a number of groups happening now. Follow #rarePOV to join in
MommyBeggiato
RT @PhRMA: Great discussion on #rarediseases from a number of groups happening now. Follow #rarePOV to join in
MommyBeggiato
RT @RareDR: Q3: patient organization need to have databases that biopharm and together they can go to the FDA #RarePOV
zeighami
@SDFatPhRMA The questions need to be framed in simple ways. Policy is wonky. Needs to be accessible yet true. #RarePOV
jocelynulrich
RT @KUhlendorf: @SDFatPhRMA By participating in forums like #RarePOV. Great job bringing us together to discuss #raredisease opportunities,…
AfternoonNapper
@mvennitti Yes! Love this collaborative chat. #RarePOV
Neil_Rubenstein
here here RT @mvennitti Q4 Let's invest time in #raredisease tweetchats inviting #pharma, #biotechs, patients & orgs. #Rarepov
KimTweetsDC
RT @zeighami: I think patient groups can fund Natural History Studies and open the data. It is low risk and invites invesment. #RarePOV
zeighami
@SDFatPhRMA @afternoonnapper @us_fda I think that we can't be afraid of telling uncomfortable truths #RarePOV
FasterCures
#RarePOV How do we encourage #biopharma to share control arm #data to make future #clinicaltrials more efficient?
mvennitti
Q4 Let's invest time in #raredisease tweetchats inviting #pharma, #biotechs, patients & orgs. #Rarepov
cartestdrivers
RT @FasterCures: #RarePOV #tweetchat proving there are major challenges & blocks in road 2 cures. B part of the solution at #P4C2013 http:/…
SDFatPhRMA
Q5: how can we leverage social media to raise awareness of #raredisease, collaborate & move bar on policy issues? #RarePOV
StephanieCHicks
@SDFatPhRMA @SanfordCoRDS But they only seem to follow big money... Many org registries are discounted as amateur #raredisease #RarePOV
chastongordon
@ACROhealth This seems to be the hotbutton & most vocalized on #RarePOV #raredisease #clinicaltrials etc. Seeing this time & time again.
CureSarcoma
RT @FasterCures: #RarePOV #tweetchat proving there are major challenges & blocks in road 2 cures. B part of the solution at #P4C2013 http:/…
Neil_Rubenstein
MT @seeinsepia @SDFatPhRMA Docs need 2 listen, trust RD PTs. RDs often present different, not enough 4 "textbook" cases #RarePOV
seeinsepia
@shangaur @SDFatPhRMA In med school, were you encouraged to #collaborate for #raredisease PTs? #RarePOV
NHCouncil
RT @PhRMA: Great discussion on #rarediseases from a number of groups happening now. Follow #rarePOV to join in
mvennitti
@seeinsepia Absolutely correct. Little research does not compare to patient experience and some #doc depend on only that. #Rarepov
AfternoonNapper
@zeighami +1 for the hockey reference. :) #RarePOV
KUhlendorf
RT @RemRunner: @mvennitti Three cheers! #raredisease advocates are most innovative and forward thinking bc system is broken for us. #RarePOV
zeighami
@SDFatPhRMA @rarediseases A single company funds an NHS to push their drug. Patients need as many shots on goal as possible #RarePOV
RareAdvocates
RDLA @RareAdvocates over 4 years ago
Great Report from @FasterCures lessons from HIV advocacy - must educate the patients & empower them to be advocates- not just orgs #RarePOV
SDFatPhRMA
RT @JFCConsultants: #RAREPOV Q4 Pt grps find the common demoninator to collaborate; know will not always agree but to respect and work for…
Pamskid
RT @AfternoonNapper: Wonder how many #raredisease pts are too busy being pts to be advocates... #RarePOV
SDFatPhRMA
RT @ACROhealth: #RarePOV Need more R&D $, better reg policy, better science, more patient involvement, innovative #clinicaltrials. Don't al…
zeighami
@SDFatPhRMA @rarediseases this great WSJ piece explains why patient funded NHS are MORE valuable (open) online.wsj.com/news/articles/… #RarePOV
ConsanoMolly
RT @FMDAdvocate: Overlapping rare diseases could try a collaborative registry #RarePOV
JFCConsultants
#RAREPOV Q4 Pt grps find the common demoninator to collaborate; know will not always agree but to respect and work for the greater good.
ACROhealth
#RarePOV Need more R&D $, better reg policy, better science, more patient involvement, innovative #clinicaltrials. Don't all diseases?
KimTweetsDC
RT @curetheprocess: Q3: bit.ly/H6qV7C FDA public workshop Jan 6-7, 2014 #RarePOV
curetheprocess
RT @FasterCures: #RarePOV #tweetchat proving there are major challenges & blocks in road 2 cures. B part of the solution at #P4C2013 http:/…
SDFatPhRMA
RT @FasterCures: #RarePOV #tweetchat proving there are major challenges & blocks in road 2 cures. B part of the solution at #P4C2013 http:/…
SDFatPhRMA
RT @RemRunner: @mvennitti Three cheers! #raredisease advocates are most innovative and forward thinking bc system is broken for us. #RarePOV
MommyBeggiato
RT @zeighami: I think patient groups can fund Natural History Studies and open the data. It is low risk and invites invesment. #RarePOV
CDKL5USA
More #patientadvocates need to attend stakeholder meetings like @NORD @GlobalGenes for incredible opportunity 4 learning #RarePOV
SDFatPhRMA
RT @planterofhope: @SDFatPhRMA Q4 we need to make collaborating easier. In US pt opt in to registries which limits data #RarePOV
MommyBeggiato
RT @FasterCures: #RarePOV #tweetchat proving there are major challenges & blocks in road 2 cures. B part of the solution at #P4C2013 http:/…
scweiss2001
RT @PhRMA: Great discussion on #rarediseases from a number of groups happening now. Follow #rarePOV to join in
FasterCures
RT @planterofhope: @SDFatPhRMA Q4 we need to make collaborating easier. In US pt opt in to registries which limits data #RarePOV
SDFatPhRMA
@zeighami Natural history studies & patient registries were raised as helpful tools at @RareDiseases conference last week #RarePOV
KimTweetsDC
.@GlobalGenes New generation of venture philanthropy orgs changing face of pt-funded research. @FasterCures fastercures.org/publications/v… #RarePOV
FasterCures
#RarePOV #tweetchat proving there are major challenges & blocks in road 2 cures. B part of the solution at #P4C2013 partneringforcures.org
SDFatPhRMA
RT @zeighami: I think patient groups can fund Natural History Studies and open the data. It is low risk and invites invesment. #RarePOV
RemRunner
@mvennitti Three cheers! #raredisease advocates are most innovative and forward thinking bc system is broken for us. #RarePOV
GlobalGenes
@RemRunner Would love to learn more about the course you took in law school re: #raredisease policy. Will email you! #RarePOV
seeinsepia
@SDFatPhRMA Doctors need to listen better, trust RD PTs. RDs often present differently, not enough incidents for "textbook" cases #RarePOV
planterofhope
@SDFatPhRMA Q4 we need to make collaborating easier. In US pt opt in to registries which limits data #RarePOV
AfternoonNapper
@StephanieCHicks Agreed. I advocate now and will continue to do so until I simply can't any longer. It's what I'm supposed to do. #RarePOV
friedah03
Critical! MT @SDFatPhRMA: Patient registries & natural history studies helpful to #biopharma cos interested in #raredisease #RarePOV
ConsanoMolly
RT @FasterCures: #RarePOV Highlight broad biopharma challenges to #FDA. Patient groups don’t have a conflict of interest, other than gettin…
teaminspire
@mvennitti We see among our rare disease assn. partners that they cannot do as much as they want, due to effects of the disease. #RarePOV
SDFatPhRMA
RT @chastongordon: @KUhlendorf R&D - R&D - R&D...That's the key and is at the heart of the solution #RarePOV #raredisease
zeighami
I think patient groups can fund Natural History Studies and open the data. It is low risk and invites invesment. #RarePOV
SDFatPhRMA
RT @FasterCures: #RarePOV Highlight broad biopharma challenges to #FDA. Patient groups don’t have a conflict of interest, other than gettin…
mvennitti
RT @KimTweetsDC Best approach couples powerful patient stories w/ robust data to document range of experiences. #RarePOV
SDFatPhRMA
RT @Foot_Drop: Interesting chat #RarePOV very encouraging to see #raredisease interest by so many
SDFatPhRMA
@mvennitti @RemRunner We need technology tools to make it easier to share data, input w/ @us_FDA. @GeneticAlliance leader in this #RarePOV
RemRunner
@AfternoonNapper Thank y. That's why I studied #raredisease policy in law school. Current incentives are not enough. #RarePOV
friedah03
Good point RT @AfternoonNapper: Wonder how many #raredisease pts are too busy being pts to be advocates... #RarePOV
StephanieCHicks
@AfternoonNapper True...but one I will do until docs and schools know and accept the realities of #rarediseases . #RarePOV
chastongordon
@KUhlendorf R&D - R&D - R&D...That's the key and is at the heart of the solution #RarePOV #raredisease
KickALS
@SDFatPhRMA. We can't rely on fndations to speak FOR us. Band together and prove there is a population ready & willing. #RarePOV.
KMBTweets
RT @AfternoonNapper: Wonder how many #raredisease pts are too busy being pts to be advocates... #RarePOV
TrishaTorrey
good question> RT @AfternoonNapper: Wonder how many #raredisease pts are too busy being pts to be advocates... #RarePOV
CCatPhRMA
RT @Foot_Drop: Interesting chat #RarePOV very encouraging to see #raredisease interest by so many
SanfordCoRDS
RT @SDFatPhRMA: Patient registries & natural history studies can very be helpful to #biopharma cos interested in #raredisease #RarePOV
KimTweetsDC
RT @FasterCures: #RarePOV Highlight broad biopharma challenges to #FDA. Patient groups don’t have a conflict of interest, other than gettin…
GlobalEpi
RT @SDFatPhRMA: Patient registries & natural history studies can very be helpful to #biopharma cos interested in #raredisease #RarePOV
PharmaMKTnet
RT @PhRMA: Great discussion on #rarediseases from a number of groups happening now. Follow #rarePOV to join in
mvennitti
Q4 Don't forget #raredisease patients are #SICK. Advocacy work is grueling. How about initiative comes from the top! #rarepov
Foot_Drop
Interesting chat #RarePOV very encouraging to see #raredisease interest by so many
Neil_Rubenstein
@AfternoonNapper patient orgs need to do a much better job working together. Infighting is more detrimental in rare @RareDR #rarepov
jnfuhrman
MT @AfternoonNapper If we keep putting it on #raredisease pt advocates to fight the fight, they're going to burn out #RarePOV
zeighami
RT @curetheprocess: Q3: bit.ly/H6qV7C FDA public workshop Jan 6-7, 2014 #RarePOV
SDFatPhRMA
RT @KUhlendorf: Q4: By working together to advocate for policies that encourage, not deter, investment in #raredisease R&D. #RarePOV
SDFatPhRMA
RT @AfternoonNapper: Wonder how many #raredisease pts are too busy being pts to be advocates... #RarePOV
StephanieCHicks
RT @AfternoonNapper: If we keep putting it on #raredisease pt advocates to fight the fight, we're going to burn out our advocates. #RarePOV
SDFatPhRMA
@AfternoonNapper No need to fight, but helpful to provide input to @us_fda when opps arise, and raise awareness #RarePOV
KimTweetsDC
RT @FasterCures: #RarePOV #Patient & #advocate voice is so crucial in helping policy makers understand the need @zeighami http://t.co/ktMun…
FasterCures
#RarePOV Highlight broad biopharma challenges to #FDA. Patient groups don’t have a conflict of interest, other than getting a cure.
seeinsepia
@planterofhope @lanihashimoto 23&me is nice, but cost & education are barriers. What if RD PT doesn't know they have RD yet? #RarePOV
AfternoonNapper
@RemRunner That's got to be really disheartening! #RarePOV
GlobalEpi
RT @AfternoonNapper: If we keep putting it on #raredisease pt advocates to fight the fight, we're going to burn out our advocates. #RarePOV
MommyBeggiato
RT @SDFatPhRMA: Q4: how can patient advocates engage with each other & #biopharma cos to advance dev of new meds for #raredisease? #RarePOV
NHCouncil
@GlobalGenes So true. Need all views of health care community to develop practical/pragmatic solutions to complex issues #RarePOV
Dan_Seaton
RT @SDFatPhRMA: Patient registries & natural history studies can very be helpful to #biopharma cos interested in #raredisease #RarePOV
KUhlendorf
RT @SDFatPhRMA: Patient registries & natural history studies can very be helpful to #biopharma cos interested in #raredisease #RarePOV
chastongordon
Regarding comments by @shangaur what can be done to make that happen for #RarePOV #raredisease
CDKL5USA
RT @GlobalEpi: #RarePOV tweetchat is trending on Twitter! Let's keep up the great conversation about #rarediseases #patientexperience #pat
cchen7
RT @FasterCures: Q3 #RarePOV Help the FDA decide what is “effective” for a #patient. Sometimes effective is quality of life improvement, n…
KUhlendorf
Q4: By working together to advocate for policies that encourage, not deter, investment in #raredisease R&D. #RarePOV
AfternoonNapper
Wonder how many #raredisease pts are too busy being pts to be advocates... #RarePOV
RemRunner
A4 Researchers have known next step for #narcolespy treatment since 1999, but 1 small NIH-funded study in this area in 14 years. #RarePOV
MommyBeggiato
RT @FasterCures: #RarePOV #Patient & #advocate voice is so crucial in helping policy makers understand the need @zeighami http://t.co/ktMun…
SDFatPhRMA
Patient registries & natural history studies can very be helpful to #biopharma cos interested in #raredisease #RarePOV
Neil_Rubenstein
RT @GlobalEpi: #RarePOV tweetchat is trending on Twitter! Let's keep up the great conversation about #rarediseases #patientexperience #pat
seeinsepia
@Durhane @lanihashimoto I agree w @planterofhope insurance + copays + maintenance treatment = not much $ for RD PT for tesing #RarePOV
planterofhope
RT @FasterCures: Q3 #RarePOV Help the FDA decide what is “effective” for a #patient. Sometimes effective is quality of life improvement, n…
MommyBeggiato
RT @FMDAdvocate: @FasterCures How can we help @FDA_Drug_Info when there is no drug for my disease being studied? #RarePOV
FasterCures
#RarePOV #patient groups should share best practices for engaging #biopharma train.fastercures.org
OIFoundation
RT @GlobalEpi: #RarePOV tweetchat is trending on Twitter! Let's keep up the great conversation about #rarediseases #patientexperience #pat
AfternoonNapper
If we keep putting it on #raredisease pt advocates to fight the fight, we're going to burn out our advocates. #RarePOV
planterofhope
RT @KUhlendorf: @SDFatPhRMA By participating in forums like #RarePOV. Great job bringing us together to discuss #raredisease opportunities,…
shangaur
@AfternoonNapper @RareDiseases Yes collaboration is key, but giving individuals autonomy in the drug discovery process is critical. #RarePOV
KimTweetsDC
@SDFatPhRMA @US_FDA @RemRunner Best approach couples powerful patient stories w/ robust data to document range of experiences. #RarePOV
zeighami
@SDFatPhRMA I think engaging a #biopharma is key. Research can be a money sink. Industry needs a solution like patients. #rarePOV
mvennitti
Q4 Patients need financial support to attend person to person #conference, network, tell the story for community. #rarepov
RemRunner
Q4 Very little interest from #biopharma for future #narcolepsy treatment despite Orphan Drug special incentives. Makes me very sad. #RarePOV
PreetAtPhRMA
Great example here RT @UpliftingAth: Patient advocates can utilize social media to collaborate! #RarePOV
MommyBeggiato
RT @KUhlendorf: @SDFatPhRMA By participating in forums like #RarePOV. Great job bringing us together to discuss #raredisease opportunities,…
AfternoonNapper
@RareDR I don't think that pt orgs are stupid & don't know to work together—many tired, pushing against brick walls. #RarePOV
GlobalGenes
Advocates are much more educated today than years ago, need more of a collab effort with the advocates, industry, and FDA. #RarePOV
GlobalEpi
#RarePOV tweetchat is trending on Twitter! Let's keep up the great conversation about #rarediseases #patientexperience #patientadvocates
CDKL5USA
Absolutely agree with @targetcancer pt organizations need to work closely together and learn from each other. #RarePOV
SDFatPhRMA
@RareDR Great point! Pleased w/ collaborative spirit at that conference. Need all hands on deck to get new therapies to patients #RarePOV
Neil_Rubenstein
Absolutely! RT @UpliftingAth: @SDFatPhRMA A4 Patient advocates can utilize social media to collaborate! #RarePOV"
shangaur
A4 #RarePOV: Give pharma and academia access to #crowdsourced registries like @Registries4All. @GeneticAlliance
AfternoonNapper
@RareDR Re: pt organizations needing to organize/collaborate/etc — yes but... so many orgs pt led, resources, $ scarce. #RarePOV
SDFatPhRMA
RT @UpliftingAth: @SDFatPhRMA A4 Patient advocates can utilize social media to collaborate! #RarePOV
MommyBeggiato
How can rare disease patients engage with FDA? #raredisease @phrma #RarePOV
SDFatPhRMA
RT @KUhlendorf: @SDFatPhRMA By participating in forums like #RarePOV. Great job bringing us together to discuss #raredisease opportunities,…
Neil_Rubenstein
RT @SDFatPhRMA: Q4: how can patient advocates engage with each other & #biopharma cos to advance dev of new meds for #raredisease? #RarePOV
SDFatPhRMA
@AfternoonNapper Absolutely! Collaboration bwtn #biopharma industry & patients is critical. Big topic at recent @RareDiseases conf #RarePOV
KimTweetsDC
#raredisease advocates can learn from #HIV movement. Important lessons here: fastercures.org/publications/v… @FasterCures #RarePOV
RareDR
Q4: As stated at #DIA #NORD conference last week, patient organization need to organize and have data/info that pharma needs #RarePOV
zeighami
RT @FasterCures: #RarePOV #Patient & #advocate voice is so crucial in helping policy makers understand the need @zeighami http://t.co/ktMun…
CDKL5USA
RT @RareDiseases: Q3 Watch for info from #NORD on January 2014 #raredisease public hearings #RarePOV
UpliftingAth
@SDFatPhRMA A4 Patient advocates can utilize social media to collaborate! #RarePOV
Neil_Rubenstein
RT @shangaur: A3 #RarePOV Sometimes the best cures are homegrown by individuals and #crowdsourcing. #FDA should evolve to handle this type …
RareDiseases
NORD @RareDiseases over 4 years ago
Q4 Partner on #RareDiseaseDay events & activities #RarePOV
FMDAdvocate
@FasterCures How can we help @FDA_Drug_Info when there is no drug for my disease being studied? #RarePOV
StephanieCHicks
@FasterCures Yes! But does breast cancer really need billions more in funding? How about other diseases who receive thousands? #RarePOV
SDFatPhRMA
RT @curetheprocess: Q3: bit.ly/H6qV7C FDA public workshop Jan 6-7, 2014 #RarePOV
targetcancer
Q4 Patient advocates/foundations must collaborate and leverage existing resources to accelerate #raredisease treatments. #RarePOV
KUhlendorf
@SDFatPhRMA By participating in forums like #RarePOV. Great job bringing us together to discuss #raredisease opportunities, hurdles
teaminspire
RT @FasterCures: #RarePOV #Patient & #advocate voice is so crucial in helping policy makers understand the need @zeighami http://t.co/ktMun…
SDFatPhRMA
RT @NHCouncil: @FAsterCures2m – Good Point. Also consider #patient benefit/risk POV. Q3 #RarePOV Help the FDA decide what is “effective” fo…
Neil_Rubenstein
RT @FasterCures: Q3 #RarePOV Help the FDA decide what is “effective” for a #patient. Sometimes effective is quality of life improvement, n…
MeriLizzie
RT @AfternoonNapper: Perhaps quelling the idea that #raredisease is so rare would help speed Dx. Collectively we're not rare. #RarePOV
AfternoonNapper
@SDFatPhRMA Wouldn't collaborating on genetics front be mutually beneficial? #RarePOV
curetheprocess
Q3: bit.ly/H6qV7C FDA public workshop Jan 6-7, 2014 #RarePOV
SDFatPhRMA
RT @FasterCures: #RarePOV #Patient & #advocate voice is so crucial in helping policy makers understand the need @zeighami http://t.co/ktMun…
Neil_Rubenstein
RT @RareDiseases: Q2 Investors, companies bullish on orphan products #raredisease #RarePOV
KimTweetsDC
RT @FasterCures: Q1 #RarePOV It takes 2 long! Greater knowledge and communication amongst the #care community means less guess work.
NHCouncil
@FAsterCures2m – Good Point. Also consider #patient benefit/risk POV. Q3 #RarePOV Help the FDA decide what is “effective” for a #patient.
SDFatPhRMA
RT @seeinsepia: @SDFatPhRMA We need more focus on #QOL vs Cure. Docs give up when there is none. #raredisease #RarePOV
FasterCures
#RarePOV #Patient & #advocate voice is so crucial in helping policy makers understand the need @zeighami timeequalslives.org/stories/roy-ze… #TimeEqLives
GlobalEpi
RT @RareDiseases: Q3 Watch for info from #NORD on January 2014 #raredisease public hearings #RarePOV
seeinsepia
@SDFatPhRMA We need more focus on #QOL vs Cure. Docs give up when there is none. #raredisease #RarePOV
SDFatPhRMA
Q4: how can patient advocates engage with each other & #biopharma cos to advance dev of new meds for #raredisease? #RarePOV
zeighami
@SDFatPhRMA Is there a disconnect btwn @us_fda leaders like woodcock & frontline. The lower level staff needs to mt patients. #rarePOV
RemRunner
Q3 At @GlobalGenes Summit I met advocates creating their own mtgs with FDA outside of PFDD Initiative. Cheering for them! #RarePOV
RareDiseases
NORD @RareDiseases over 4 years ago
Q3 Watch for info from #NORD on January 2014 #raredisease public hearings #RarePOV
SDFatPhRMA
Thanks for joining, @KickALS! Great to see #als community engaged. #RarePOV
targetcancer
Fascinating #raredisease conversation happening now at #RarePOV!
teaminspire
RT @FMDAdvocate: Overlapping rare diseases could try a collaborative registry #RarePOV
KimTweetsDC
RT @SDFatPhRMA: Q1 some great points! The work of advocacy organizations & individual advocates to raise awareness is important #RarePOV
FMDAdvocate
Overlapping rare diseases could try a collaborative registry #RarePOV
shangaur
A3 #RarePOV Sometimes the best cures are homegrown by individuals and #crowdsourcing. #FDA should evolve to handle this type of #innovation.
PhRMA
RT @FasterCures: Q3 #RarePOV Help the FDA decide what is “effective” for a #patient. Sometimes effective is quality of life improvement, n…
ScripDonnaDC
RT @PhRMA: Great discussion on #rarediseases from a number of groups happening now. Follow #rarePOV to join in
PreetAtPhRMA
RT @FasterCures: Q3 #RarePOV Help the FDA decide what is “effective” for a #patient. Sometimes effective is quality of life improvement, n…
HOPn2light
RT @OIFoundation: Happening now! Follow #RarePOV to join in a great discussion on #raredisease
SDFatPhRMA
RT @teaminspire: Hi all at #Rarepov, John Novack here from Inspire, online peer-to-peer support communities for patients & caregivers http:…
GlobalEpi
RT @FasterCures: Q3 #RarePOV Help the FDA decide what is “effective” for a #patient. Sometimes effective is quality of life improvement, n…
KickALS
How 2 have a more realistic discussion on "risk" when people are given terminal dx. 2 many people w/ #ALS not eligible 4 trials. #RarePOV
SanfordCoRDS
Join an insightful conversation happening now on #rarediseases using the #RarePoV!
RemRunner
Q3: I felt FDA was truly LISTENING to #narcolepsy comm during our recent FDA Patient Focused Drug Development meeting. #RarePOV
NHCouncil
@LeighFazzina #RarePOV is up and running! Join the conversation!
shangaur
RT @FasterCures: Q3 #RarePOV Help the FDA decide what is “effective” for a #patient. Sometimes effective is quality of life improvement, n…
OIFoundation
Happening now! Follow #RarePOV to join in a great discussion on #raredisease
zeighami
@SDFatPhRMA @us_fda I've found FDA leaders to be courageous. Had 4:1 meeting w/ Woodcock where she took tough questions. #RarePOV
LeavUrImge2FDP
@SDFatPhRMA A3: Community affairs div of @us_fda must engage at local level. Roundtabl discussions, community forums xcllnt #rarepov
GlobalGenes
RT @FasterCures: Q3 #RarePOV Help the FDA decide what is “effective” for a #patient. Sometimes effective is quality of life improvement, n…
SDFatPhRMA
RT @FasterCures: Q3 #RarePOV Help the FDA decide what is “effective” for a #patient. Sometimes effective is quality of life improvement, n…
AfternoonNapper
RT @FasterCures: Q3 #RarePOV Help the FDA decide what is “effective” for a #patient. Sometimes effective is quality of life improvement, n…
MommyBeggiato
RT @RareDiseases: .@SDFatPhRMA Thanks for your support, happy to have you there! #raredisease #raredisease13 #RarePOV
FasterCures
Q3 #RarePOV Help the FDA decide what is “effective” for a #patient. Sometimes effective is quality of life improvement, not a complete cure
UpliftingAth
RT @PhRMA Great discussion on #rarediseases from a number of groups happening now. Follow #rarePOV to join in
SDFatPhRMA
RT @PhRMA: Great discussion on #rarediseases from a number of groups happening now. Follow #rarePOV to join in
FMDartery
Glad to learn @DrugInfoAssn @RareDiseases does not want patient funded registry to disappear due to lack of donations #RarePOV
RareDR
Q3: patient organization need to have databases that biopharm and together they can go to the FDA #RarePOV
GlobalGenes
RT @PhRMA: Great discussion on #rarediseases from a number of groups happening now. Follow #rarePOV to join in
LeighFazzina
Did the #RarePOV chat get delayed? I don't see a moderator or any chat conversation going on.
SDFatPhRMA
RT @zeighami: @SDFatPhRMA Patients are getting together to advance treatments. Especially gene therapy #RarePOV
KimTweetsDC
RT @AfternoonNapper: Awareness does not = care. We're "competing" for scarce resources. How do we make aware = care = action? #RarePOV
LeavUrImge2FDP
@SDFatPhRMA @CCatPhRMA A1: Prtnrshps b/t healthcare providers & community org's 2 educate public on signs. Cultural-based approach. #rarepov
PhRMA
Great discussion on #rarediseases from a number of groups happening now. Follow #rarePOV to join in
KUhlendorf
Why is #raredisease advocacy & research critical? Read Beth McGinn's views as "mother on a mission" phrma.org/phrmapedia/con… #RarePOV
AfternoonNapper
@SDFatPhRMA I went to @rareadvocates conf in D.C. Learned abt more @us_fda but didn't come away hopeful. #RarePOV
lanihashimoto
@planterofhope @seeinsepia Your opinion of 23&me-like services for future pts struggling for diagnosis? #raredisease #RarePOV
KimTweetsDC
RT @WWFHNC: Did you know? 50% of individuals affected by #RareDiseases are children. Follow #RarePOV Now & share your thoughts http://t.co…
SDFatPhRMA
RT @UpliftingAth: @RemRunner The fight against rare diseases is a TEAM EFFORT! Uplifting Athletes is excited to be a part of it #rarePOV
Dan_Seaton
Q2 In addition to 452 #medsindev, biopharma companies work 2 make clinical trials faster safer w/initiatives like #TransCelerate #RarePOV
SDFatPhRMA
Q3: How can #raredisease patients engage with @us_fda? @remrunner & @KimTweetsDC recently participated in public mtg #RarePOV
zeighami
@ACROhealth Unfortunately, I am painfully aware in my son's case. I perceive FDA more willing to accept risk 4 cancer, hiv, etc #RarePOV
GlobalHealth
RT @FasterCures: Foundations are important for connecting basic #research and industry. Knowledge generation + #cures development #RarePOV
CDKL5USA
RT @FasterCures: Foundations are important for connecting basic #research and industry. Knowledge generation + #cures development #RarePOV
chastongordon
More funding for #clinicaltrials is needed badly for #RarePOV #raredisease
seeinsepia
Anyone else #RarePOV find that doctors want to limit physical activity out of fear as soon as you were Dx vs using it as part of treatment?
SDFatPhRMA
Loving all the feedback! Keep it coming! #RarePOV
zeighami
@SDFatPhRMA I also think patient groups are acting like VCs. Grouping big $$ but asking for equity vs donations. #RarePOV
whadvocacy
RT @NHCouncil: Check out the MODDERN Cures Act (HR 3116)-it advances creation of & access to new diagnostics ow.ly/pVk5d #RarePOV
Foot_Drop
@SDFatPhRMA no registry or research for foot drop caused by spinal artery infarction #RarePOV
UpliftingAth
@RemRunner The fight against rare diseases is a TEAM EFFORT! Uplifting Athletes is excited to be a part of it #rarePOV
SDFatPhRMA
Check out @Durhane's thoughts on access to new #raredisease treatments in Conversations Forum phrma.org/phrmapedia/con… #RarePOV
CDKL5USA
RT @UpliftingAth: @SDFatPhRMA A1 Continue to spread awareness and unify the rare disease community! #RarePOV
KUhlendorf
RT @FMDAdvocate: Social media is spreading rare disease attention faster than ever before Q2 #RarePOV
jocelynulrich
RT @KUhlendorf: @GlobalGenes @SDFatPhRMA @PhRMA Following your lead and passion for #raredisease advocacy #RarePOV
CDKL5USA
RT @SDFatPhRMA: Q1 some great points! The work of advocacy organizations & individual advocates to raise awareness is important #RarePOV
planterofhope
@lanihashimoto 16 yrs and still researches can't agree about symptoms vs dx #RarePOV
AfternoonNapper
@ACROhealth Big complaints in my Dx? Pain, fatigue, headache, dizziness. Those have meds. But not specifically for us. Help? #RarePOV
Strangely_T1
RT @AfternoonNapper: Awareness does not = care. We're "competing" for scarce resources. How do we make aware = care = action? #RarePOV
RareDiseases
NORD @RareDiseases over 4 years ago
.@SDFatPhRMA Thanks for your support, happy to have you there! #raredisease #raredisease13 #RarePOV
zeighami
@SDFatPhRMA Payers need to be part of the conversation, especially for 1 in lifetime treatments which may be expensive #RarePOV
RemRunner
@UpliftingAth This is awesome work!! I'm so glad to have discovered what you are doing through @SDFatPhRMA and #RarePOV
SDFatPhRMA
RT @RareDR: Q2- Gov’t, patients, pharm doing lots to promote orphan drugs can 1) be profitable 2) help understand common ailments #RarePOV
HealthyTN
@lynnwms FYI tweet chat going on re: #raredisease with @SDFatPhRMA. Follow #rarePOV to join in. cc @ACSCAN
SDFatPhRMA
RT @KimTweetsDC: #RarePOV demonstrated by #narcolepsy community through #patientfocused survey w/ 1700 responses & growing! http://t.co/l7t…
seeinsepia
@lanihashimoto #RarePOV The specialist for #OI I saw didn't think I had the disorder, I had to go to a genetic specialist to get the testing
ACROhealth
@AfternoonNapper Yes, we can be more innovative in #clinicaltrial design to test multiple indications and multiple treatments. #RarePOV
SDFatPhRMA
RT @FMDAdvocate: Social media is spreading rare disease attention faster than ever before Q2 #RarePOV
zeighami
@SDFatPhRMA Patients are getting together to advance treatments. Especially gene therapy #RarePOV
KimTweetsDC
RT @FasterCures: Q2 #RarePOV It's important 2 create a network of #patients so that #researchers have easy to access resources
RemRunner
@Durhane Thank goodness for persistent parents - leading the #raredisase charge! My condition developed in 20s, so different. #RarePOV
KUhlendorf
RT @RareDR: Q1 - Educate docs and develops Apps for symptom recognition that clinicians will use (the latter is tricky) #RarePOV
UpliftingAth
@SDFatPhRMA A2 College football players across the country are tackling #rarediseases through Uplifting Athletes fundraisers! #RarePOV
planterofhope
Q2 #RarePOV even when treatments are available, often off label and not cost effective. too many families can't afford meds
SDFatPhRMA
Such a great discussion last week at @DrugInfoAssn @RareDiseases conference abt collaboration bwtn #biopharma & advocacy orgs #RarePOV
KUhlendorf
RT @RareDiseases: Q2 Investors, companies bullish on orphan products #raredisease #RarePOV
CCatPhRMA
RT @FMDAdvocate: Social media is spreading rare disease attention faster than ever before Q2 #RarePOV
shangaur
@SDFatPhRMA @Durhane @RemRunner Docs can stay informed by listening to their clients and encouraging them to share data. #RarePOV
FasterCures
RT @FMDAdvocate: Social media is spreading rare disease attention faster than ever before Q2 #RarePOV
NHCouncil
RT @KimTweetsDC: #RarePOV demonstrated by #narcolepsy community through #patientfocused survey w/ 1700 responses & growing! http://t.co/l7t…
GradyAtPhRMA
RT @WWFHNC: Did you know? 50% of individuals affected by #RareDiseases are children. Follow #RarePOV Now & share your thoughts http://t.co…
zeighami
@ACROhealth It happened for MPS IIIA, MPS VIA, MLD, MPS VI & now CLN2 (Batten Disease) and MPS VII. Apparently disparate tox req #RarePOV
FMDAdvocate
Social media is spreading rare disease attention faster than ever before Q2 #RarePOV
FasterCures
Q2 #RarePOV It's important 2 create a network of #patients so that #researchers have easy to access resources
seeinsepia
@lanihashimoto #RarePOV Late - took until I was 21
SDFatPhRMA
RT @RareDiseases: Q2 Investors, companies bullish on orphan products #raredisease #RarePOV
KimTweetsDC
#RarePOV demonstrated by #narcolepsy community through #patientfocused survey w/ 1700 responses & growing! unitenarcolepsy.org/wp-content/upl…
KUhlendorf
@IAmBiotech @Dan_Seaton @SDFatPhRMA Good to see you virtually, original CT. #RarePOV
RareDR
Q2- Gov’t, patients, pharm doing lots to promote orphan drugs can 1) be profitable 2) help understand common ailments #RarePOV
AfternoonNapper
Med dev is GREAT but would love to see more #clinicaltrials for existing meds used to treat symptoms, improve QOL. #RarePOV
HealthyTN
RT @CCatPhRMA: Q2 #rarePOV: more happening than many think! Check out the 452 #medsindev. phrma.org/Medicines-Deve…
FasterCures
Q2 #RarePOV #Rarediseases make up about 1/3 of newly @US_FDA approved drugs. The may approvals B there but the price tags R 2 high.
StephanieCHicks
@GlobalGenes but that would require schools to want to, and many don't want to or can't b/c of budgets. #rarediseases #rarepov
RareDiseases
NORD @RareDiseases over 4 years ago
Q2 Investors, companies bullish on orphan products #raredisease #RarePOV
incrystalskin
We're tuning in to the #tweetchat happening now and following #RarePOV
KUhlendorf
@SDFatPhRMA Good info in @PhRMA #raredisease report on new scientific approaches onphr.ma/1clRBML #RarePOV
shangaur
A2 #RarePOV: Pooling data and #crowdsourcing through @Reg4All and @GeneticAlliance. Individuals should control their own data!
AfternoonNapper
Having med dev means enough is known abt disease to even dev med. Our Dx recently heard NIH study will not have follow ups. #RarePOV
gsfoundation
RT @FasterCures: Foundations are important for connecting basic #research and industry. Knowledge generation + #cures development #RarePOV
targetcancer
RT @FasterCures: Foundations are important for connecting basic #research and industry. Knowledge generation + #cures development #RarePOV
lanihashimoto
Q1 follow-up ? for patients: when/did genetic testing enter your diagnostic process? Early? Late? #RarePOV
seeinsepia
RT @AfternoonNapper: Awareness does not = care. We're "competing" for scarce resources. How do we make aware = care = action? #RarePOV
SDFatPhRMA
RT @FMDAdvocate: @SDFarmtoSchool thanks for hosting chat today. Fibromuscular Dysplasia #raredisease is here #RarePOV
SanfordCoRDS
RT @AfternoonNapper: Awareness does not = care. We're "competing" for scarce resources. How do we make aware = care = action? #RarePOV
GlobalGenes
RT @RareDR: Q1 - Educate docs and develops Apps for symptom recognition that clinicians will use (the latter is tricky) #RarePOV
SDFatPhRMA
RT @CCatPhRMA: Q2 #rarePOV: more happening than many think! Check out the 452 #medsindev. phrma.org/Medicines-Deve…
ACROhealth
@zeighami Curious, where is data that phase I/II moving to Europe? #RarePOV
SDFatPhRMA
RT @WWFHNC: Did you know? 50% of individuals affected by #RareDiseases are children. Follow #RarePOV Now & share your thoughts http://t.co…
SDFatPhRMA
@Durhane @RemRunner True, being an informed & empowered patient is important! And we want our doctors to be informed too. #RarePOV
RemRunner
I love what you are doing @UpliftingAth! Thank you. #RarePOV
FMDChat
RT @FMDAdvocate: @SDFarmtoSchool thanks for hosting chat today. Fibromuscular Dysplasia #raredisease is here #RarePOV
teaminspire
RT @CCatPhRMA: Q2 #rarePOV: more happening than many think! Check out the 452 #medsindev. phrma.org/Medicines-Deve…
UpliftingAth
RT @AfternoonNapper Frankly I'm rather tired of the #zebra mentality. I'm not a freak; I'm a patient w/ needs like any other. #RarePOV
CCatPhRMA
Q2 #rarePOV: more happening than many think! Check out the 452 #medsindev. phrma.org/Medicines-Deve…
NHCouncil
RT @AfternoonNapper: Awareness does not = care. We're "competing" for scarce resources. How do we make aware = care = action? #RarePOV
WWFHNC
Did you know? 50% of individuals affected by #RareDiseases are children. Follow #RarePOV Now & share your thoughts onphr.ma/1e6MOzq
RareDiseases
NORD @RareDiseases over 4 years ago
RT @RareDR: Q1 - Educate docs and develops Apps for symptom recognition that clinicians will use (the latter is tricky) #RarePOV
GlobalGenes
RT @FasterCures: Foundations are important for connecting basic #research and industry. Knowledge generation + #cures development #RarePOV
SDFatPhRMA
RT @AfternoonNapper: Awareness does not = care. We're "competing" for scarce resources. How do we make aware = care = action? #RarePOV
HealthyTN
@ACSCAN @TNKidney FYI tweet chat going on re: #raredisease with @SDFatPhRMA. Follow #rarePOV to join in.
RemRunner
A1: I LOVE #infographic. School admin are taking #narcolepsy more seriously seeing this graphic. #RarePOV julieflygare.com/narcolepsy-inf…
GlobalGenes
Q1. Advocate groups working together can work to help educate the medical community better than any book or course. #rarepov
FasterCures
Foundations are important for connecting basic #research and industry. Knowledge generation + #cures development #RarePOV
RareDiseases
NORD @RareDiseases over 4 years ago
Q1 Great physician awareness campaigns like @short_of_breath's "Sometimes it’s PH" #raredisease #RarePOV ow.ly/pVlEW
SDFatPhRMA
Q2: what is being done to develop treatments for #raredisease? #RarePOV
targetcancer
TargetCancer is here as well- thanks for having us @SDFatPhRMA! #rarepov
KUhlendorf
@zeighami @SDFatPhRMA @PhRMA Agreed. Hopefully learnings in one #raredisease will lead to pathways, progress in many others #RarePOV
AfternoonNapper
Awareness does not = care. We're "competing" for scarce resources. How do we make aware = care = action? #RarePOV
PreetAtPhRMA
RT @UpliftingAth: @SDFatPhRMA A1 Continue to spread awareness and unify the rare disease community! #RarePOV
SanfordCoRDS
RT @SDFatPhRMA: Q1 some great points! The work of advocacy organizations & individual advocates to raise awareness is important #RarePOV
zeighami
Issue: many phase 1/2 studies are moving to Europe. Bad 4 docs, economy and US patients. Need glbl harmony 4 safety requirements #RarePOV
GlobalEpi
@SDFatPhRMA @PhRMA @GlobalEpi Here and looking forward to important conversations about #rarediseases #RarePOV
GlobalGenes
Q1. Phys Ed needs to incorp #rarediseases. Can't expect them to know all, but can educate them to look beyond the general dxs. #rarepov
RareDR
Q1 - Educate docs and develops Apps for symptom recognition that clinicians will use (the latter is tricky) #RarePOV
UpliftingAth
@SDFatPhRMA A1 Continue to spread awareness and unify the rare disease community! #RarePOV
KimTweetsDC
RT @RemRunner: "We may be RARE, but we've got ROAR!" Join the @PhRMA Tweetchat on #RareDisease today at 4pm ET. Follow: #RarePOV http://t.c…
FMDartery
@SDFatPhRMA kudos for hosting #raredisease twitter chat. Fibromuscular Dysplasia Society of America here #RarePOV
SDFatPhRMA
@RemRunner Very true! You & other advocates can really move the ball in terms of awareness. #RarePOV
KimTweetsDC
RT @FasterCures: Getting ready 2 talk #raredisease on @PhRMA's #RarePOV #tweetchat 4PM If you're invested in #medicalresearch - you'll want…
LillyPad
RT @SDFatPhRMA: Q1 some great points! The work of advocacy organizations & individual advocates to raise awareness is important #RarePOV
Neil_Rubenstein
RT @CCatPhRMA Gr8 pt! MT @AfternoonNapper: Quelling the idea that #raredisease is so rare wuld speed Dx. we're not rare. #RarePOV
SDFatPhRMA
Q1 some great points! The work of advocacy organizations & individual advocates to raise awareness is important #RarePOV
seeinsepia
RT @AfternoonNapper: Frankly I'm rather tired of the #zebra mentality. I'm not a freak; I'm a patient w/ needs like any other. #RarePOV
RemRunner
@AfternoonNapper So true!! I'm tired of hearing from doctors "oh, that's sooo rare." It's discarding my entire experience. #RarePOV
rv_rikard
RT @teaminspire: Hi all at #Rarepov, John Novack here from Inspire, online peer-to-peer support communities for patients & caregivers http:…
shangaur
@SDFatPhRMA #Crowdsourcing and #datasharing can decrease time for diagnosis. More eyes on more data points = faster diagnosis. #RarePOV
RemRunner
A1: Awareness is a HUGE issue for #raredisease! I wrote #memoir to help raise awareness about #narcolepsy. amazon.com/dp/0988314908/ #RarePOV
SDFatPhRMA
RT @FasterCures: Q1 #RarePOV It takes 2 long! Greater knowledge and communication amongst the #care community means less guess work.
FMDAdvocate
@SDFarmtoSchool thanks for hosting chat today. Fibromuscular Dysplasia #raredisease is here #RarePOV
zeighami
top of mind: Need more Phase 1/2 trials in US. For the 6300 diseases w/o drug or smoothing in pipeline, that is their only hope. #RarePOV
Neil_Rubenstein
RT @SanfordCoRDS RT @RareDiseases: .@SDFatPhRMA Q1: Change the mindset; Watch for zebras #raredisease #RarePOV
SDFatPhRMA
RT @AfternoonNapper: Frankly I'm rather tired of the #zebra mentality. I'm not a freak; I'm a patient w/ needs like any other. #RarePOV
lanihashimoto
RT @AfternoonNapper: Frankly I'm rather tired of the #zebra mentality. I'm not a freak; I'm a patient w/ needs like any other. #RarePOV
FasterCures
Q1 #RarePOV It takes 2 long! Greater knowledge and communicatio