-
Always grateful for the scholarships received to represent the ABDA. Headed to Washington, DC this morning for the Rare Disease Legislative Advocates meetings. A big shoutout to the EveryLife Foundation for all their work on behalf of our patients.

#everylifefoundation -
#biosummit19 making headway learning about#raredisease and#findingacure#emilysentourage#ryanfoundation#everylifefoundation#beyondceliacpic.twitter.com/ixvaljPRuX
-
1/3 Good data = good policy! That’s why the
#EveryLifeFoundation has made identifying the true cost of living with a#RareDisease a major policy focus in 2020. We are thrilled to share that@realDonaldTrump signed the Further Consolidated Appropriations Act, 2020 (HR 1865) -
Join us Thursday!
#RareDisease advocacy with#everylifefoundation@seattlechildren@RepDelBene@PattyMurraypic.twitter.com/SoyOmIqku5 – mjesto: Seattle Children's Hospital
-
Got my Rare Disease Awareness Pin
#everylifefoundation! Excited to rock it @#wrdd2017 in D.C. next week
@globalgenes#worldrarediseasedaypic.twitter.com/uLjQxpcwSz
-
Senator Lankford, Rare Disease Patients need Cures Now.
@SenatorLankford#CuresNOW#2016GGSummit#everylifefoundation#fightinglipodystrophypic.twitter.com/msxxuT0ihk
-
Let your voice be heard!! Join us on the hill for
#raredisease week!!! http://Www.hnf-cure.org#Everylifefoundation@RareAdvocates@RareDiseases@CheckOrphan@Pharnext@AcceleronPharma#Charcotmarietooth#CMTsupport#HNF4CMT#rarediseaseweekpic.twitter.com/dOJVu5iFPi
Prikaži ovu nit -
1 in 10 Americans are impacted by rare disease, an arena every political party can support
@RareAdvocates#RareDC2019 Thanks#EveryLifeFoundation for Rare Disease Week's opportunities! -
@alfranken you have people in Minnesota who are Worth A Cure!#CuresNow for Teddy!#mito16#umdf#everylifefoundation pic.twitter.com/J7OuPFdXxw
-
Hi Everyone! Please take a moment to go online and sign H.R. 2507/ S. 2158, the Newborn Screening Saves Lives Reauthorization Act. It only takes a minute and we all know how important this is!!
#NewbornScreening#RareDisease#EverylifeFoundation https://everylifefoundation.org/voter-voice/?vvsrc=%2fcampaigns%2f62708%2frespond … -
Thank you for sharing your rare disease hero with us. Their faces are shining brightly on our holiday tree! Here’s to 2020, may it bring us closer to treatments and cures for the 30 million Americans living with a rare disease!!!
#everylifefoundation#raredisease#happyholidayspic.twitter.com/C7D35fDSeH -
I can't express enough how important advocacy and awareness is. Be bold and tell your story. Fight for your disease. Fight for your treatments and dont stop until you win the battle
#FDWARRIORS#globalgenes#everylifefoundation https://twitter.com/FDwarriors/status/1021399249953665032 … -
Inspired to set up a twitter account by an amazing day spent @rareontheroad with
@EveryLifeOrg@GlobalGenes learning to advocate and harness social media to help find cures and get treatments approved for rare diseases#everylifefoundation#globalgenes#GSD -
Loved networking and learning more about advocacy at Rare on the Road Portland.
#GlobalGenes#EveryLifeFoundation#RareontheRoadpic.twitter.com/Jkl7BURZoI
-
So blessed the
#RDLA and#EveryLifeFoundation helped me 2 be a patient advocate & have helped 21st Cures pass!

#EhlersDanlosSyndromehttps://twitter.com/rarediseases/status/832020239495868417 … -
Our Executive Director, Julia Jenkins with Pj Brooks & Christian Rubio from
@GlobalGenes at Rare in the Square#2020RITS#SanFrancisco Join us!#globalgenes#everylifefoundation pic.twitter.com/4i5RazKNCX
-
#EveryLifeFoundation Let’s rally the masses to put patients’ lives first over profits. Our children shouldn’t die when treatments are available#RareDisease#RiseUphttps://twitter.com/TerriEllsworth/status/1134394554873012224 … -
Make an impact on federal policy close to your home. Bringing your voice to our government on behalf of the millions affected by
#Chiari,#dysautonomia,#EhlersDanlosSyndrome,#syringomyelia, and more.#EverylifeFoundation,#RDLA#RareAcrossAmericahttp://ow.ly/PnXD50u6Aek -
Thank you Morris County Freeholders for the acknowledgement and helping to raise awareness of Sarcoidosis. On behalf of the
#FoundationforSarcoidosisResearch, it was my honor to receive the Proclamation.#Everylifefoundation#NORD#Globalgenes#Eurodis#Sarcoidosis#FSR#NIHhttps://twitter.com/MorrisCountyNJ/status/1121428980186456067 …
Čini se da učitavanje traje već neko vrijeme.
Twitter je možda preopterećen ili ima kratkotrajnih poteškoća u radu. Pokušajte ponovno ili potražite dodatne informacije u odjeljku Status Twittera.