Top Tweets for #RareDC2018
Fellow ppl in the #RareDisease Community. This is Avery she is 11. Her Mom (@AverysFight), her Dad (@jmbird25), & her were all at #RareDC2018 to advocate with us.
She has #HoFH & has had TWO open heart surgeries since Friday. Prayers for her & her family would be appreciated.
I know what I will be reading on the flight from @PPALSorg! Thank you to @KyleABryant for signing a copy of Shifting into High Gear for me. I was lucky to spend Lobby Day with Kyle at #RareDC2018. You can get a copy of #ShiftingIntoHighGear at https://t.co/vFelTlaBkr.
A3 Iβm so very proud that we, @Cpnervecenter , have been invited to host twitter chats! Iβm very proud we were able to make it to #RareDC2018 & nominated as finalists for #WEGOHealthAwards #WeGoHealthChat
Q3: Let's take a moment and give ourselves credit. We as Patient Leaders downplay our success and don't always relish in our achievements.
What is an achievement you've made during your Patient Leader journey that you're proud of?#WEGOHealthChat #WEGOHealthAwards
Thank you @RepDavidYoung for signing onto co-sponsor the #OpenAct - which will re-purpose drugs already on the market for #raredisease! Thanks for meeting with Iowa advocates in February for #RareDC2018 #CureCMD
https://t.co/HSRaYWHKCM
T3 Each patient experience is unique but we may share concerns & agree on changes needed. I think of opportunities to participate in events such as #RareDC2018 as a responsibility to represent many #raredisease patients who can't be there due to health, finances, etc #patientchat
Watch video of AMC #Meds4Kids founder/CEO @RobtSelliah present the needs in #childhood #RareDisease #medicine & how our #philanthropic #SocEnt model is a bridge across the #ValleyOfDeath in research #RareDC2018 #RareCaucus #RareDiseaseDay https://t.co/oSvEHEZYQg
At the end of February, narcolepsy advocates traveled to Washington, DC for Rare Disease Week. Read all about it here: https://t.co/ivPXJjXXDG #RareDC2018 #narcolepsyawareness
@bmj_latest A1 I've attended #RAREDC2018 as well as #HIMSS17 and invited to Pittsburgh by the @umdartprogram . All were very respectful of the #PatientPerspective #BMJDebate
Hey #RareDisease peeps. Need your help making this happen. At #RareDC2018 many of you met Michelle Watts @AverysFight & her daughter Avery. Avery is a #MakeAWishKid & will be in #DC having a Walk on the Mall on 4/15 for more info. https://t.co/qV4NnW373F and it is free
Did we mention we took #pinksocks to @washingtondc for #RareDC2018?! We did & they were⨠#RareDisease #RareDiseaseDay
Definitely using this in an upcoming #blogpost. Alas, this issue is multifacited. Presently working on a #RareDC2018 Lobby Day post. So many issues impacting the #RareDisease community keeping me on my toes! #Mito #EDS @Dysautonomia #invisibleillness #RareDiseaseLife #opioids https://t.co/sLriPg8NwD
Chronic Pain Patients Did Not Cause Opioid Epidemic. Chronic pain patients are unfortunate bystanders. If you are actively lobbying to solve the opioid abuse crisis, please read this article: https://t.co/eRxrpuJdal #OpioidEpidemic #opioidcrisis #Opioidaddiction #chronicpain
Friends you meet along the way @RareAdvocates while advocating on Capitol Hill #RareDisease #RareDC2018
Gr8 conversation today with Mike Eging @MichaelEging & our CEO @RobtSelliah abt #Childhood #RareDisease #Meds4Kids and access to #medicine by patients. This is an important area of #policy & #advocacy #RareDC2018 #RareDiseaseDay
Throwback Thursday! With @PatientWorthy & advocates DC Hill event #RareDC2018 @USSenateUpdate #RareDisease congressional caucus #rare news taking the spotlight @NBCNews cameraman #PKU thanks you #research #progress #hope
Thanks to Members of Congress who cosponsored #OPENACT after meeting w/ #raredisease advocates at #RareDC2018: @RepBrianFitz (PA), @RepHastingsFL (FL), @RepComstock (VA), @RepChrisSmith (NJ) & @RepLujanGrisham (NM) We appreciate commitment to patients who need treatment options!
Throwback Thursday 1 week ago today #RareDC2018 #RareDiseaseday #Congressional Caucus @rareundiagnosed amplifying the voice 4 the undiagnosed thank u Gina #PKU
Thank you to @RepBrianFitz for cosponsoring the #OPENACT (HR 1223) after meeting with #raredisease patients from PA last week! OPEN ACT will encourage companies to repurpose medicines for rare disease, 95% of which currently lack any FDA-approved treatments. #RareDC2018
Throwback Thursday itβs #RDDNIH with @shirastrongin and the @thesickchicks #PKU thanks you #RareDC2018 amplifying the voice of patients @#RDDNIH @NIHClinicalCntr #research #hope #progress and hereβs 2 strong women making a #RareDiseaseDay impact
Throwback Thursday @NIHClinicalCntr #RDDNIH #RareDC2018 thank you institutes and 1500 clinical trials! letβs hear it for the House of #hope #researchers and #patients partners for life #PKU #RareDiseaseDay2018
Out of the valley of death @RobtSelliah @americanmedchem @ncats_nih_gov #meds4kids thanks 2 #translation #patients & #researchers as partners #RareDC2018 #PKU thanks you
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