Rezultati pretraživanja
  1. 4. pro 2019.

    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. 💙

  2. 30. lis 2019.
  3. 1/3 Good data = good policy! That’s why the has made identifying the true cost of living with a a major policy focus in 2020. We are thrilled to share that signed the Further Consolidated Appropriations Act, 2020 (HR 1865)

  4. 28. lip 2016.
  5. 23. velj 2017.

    Got my Rare Disease Awareness Pin ! Excited to rock it @ in D.C. next week ❤

  6. 23. ruj 2016.
  7. Prikaži ovu nit
  8. 25. velj 2019.

    1 in 10 Americans are impacted by rare disease, an arena every political party can support Thanks for Rare Disease Week's opportunities!

  9. 30. ruj 2016.

    you have people in Minnesota who are Worth A Cure! for Teddy!

  10. 16. sij

    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!!

  11. 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!!!

  12. 23. srp 2018.

    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

  13. 13. srp 2019.

    Inspired to set up a twitter account by an amazing day spent @rareontheroad with learning to advocate and harness social media to help find cures and get treatments approved for rare diseases

  14. 16. srp 2017.

    Loved networking and learning more about advocacy at Rare on the Road Portland.

  15. So blessed the and helped me 2 be a patient advocate & have helped 21st Cures pass! ❤😊

  16. 13. sij

    Our Executive Director, Julia Jenkins with Pj Brooks & Christian Rubio from at Rare in the Square Join us!

  17. 31. svi 2019.

    Let’s rally the masses to put patients’ lives first over profits. Our children shouldn’t die when treatments are available

  18. 10. svi 2019.

    Make an impact on federal policy close to your home. Bringing your voice to our government on behalf of the millions affected by , , , , and more. ,

  19. 25. tra 2019.

    Thank you Morris County Freeholders for the acknowledgement and helping to raise awareness of Sarcoidosis. On behalf of the , it was my honor to receive the Proclamation.

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.