Rezultati pretraživanja
  1. 12. sij

    We will be at ...Will you?? Registration is officially open. Visit

  2. 19. ožu 2019.

    Two groups, one message: ! Thank you to our advocates who braved the chilly temps to gather for these photos! Stay engaged. Stay connected. Save the date: February 24th - 28th, 2020.

  3. 9. sij

    Officially registered for 5th year in a row! Let the migration of the Zebras begin

  4. 15. sij

    Congratulations to the 2019 Rare Artist Contest Awardees! Each awardee will have a chance to share their story and display their art piece at the Rare Artist Reception on Februray 27th, during on Capitol Hill. Check out their stories 👉

  5. 23. sij

    We are pleased to work with on establishing the FDA’s Rare Disease Day Public Meeting during To register please visit -->

  6. 31. sij

    Only 3 more weeks until in Capitol Hill! To register visit All events are FREE, but previous registration is required. Who's joining us for ?🙌

  7. 30. pro 2019.

    Are you interested in meeting with legislators to share how has impacted you & your family? Registration for Rare Disease Week on Capitol Hill opens on January 2nd. Learn more at . All events are free to patients & caregivers.

  8. 4. velj

    This warm weather has us eager for spring! Lots of events are happening at & around the that you don’t want to miss - check out our monthly newsletter for a full list including curling & 🍸 at , 's & more:

  9. 1. velj
    Odgovor korisniku/ci

    Jennifer, New York. To share my story and meet others like myself or similar. Be "normal" for a few days ♡ Awareness is everything

  10. 30. sij

    For any narcolepsy advocate going to Rare Disease Week, let know what you hope to get out of !

    Tweet je nedostupan.
  11. 30. sij

    What do you hope to get out of ? Share your answer and include your Name/State for a chance to appear in our 2020 Rare Disease Week Program.

    Prikaži ovu nit
  12. 29. sij

    This will be my 5th RareDC event and everytime I learn something new. These webinars are beneficial for the new and experienced advocate

  13. 29. sij

    ATTENTION new and experienced advocates! We want to give you as much information as possible and answer all your questions before you head to Washington D.C. Visit and make sure you register for our February Webinars.

  14. 27. sij

    Members of the Scleroderma Foundation will be attending Rare Disease Week, February 25-28. Join US! Register here: .

  15. 21. sij

    Very excited that my daughter and I are going to Washington DC this year for and . Are any of my or friends going to be there? hope to see you!

  16. 16. sij
    Prikaži ovu nit
  17. 9. sij

    We are excited to be attending, especially the young adult meet-up!

  18. 9. sij
  19. 9. sij

    That's great news! Can't wait to see everyone on 🙌

  20. 9. sij

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