Rezultati pretraživanja
  1. 26. velj 2018.

    Some interesting facts... if you’re rare you’re not alone!

  2. 26. velj 2018.

    save your donkeys and elephants :) no one is excluded from rare disease and everyone benefits with the needs are addressed.

  3. 27. velj 2018.

    Proud to advocating with my daughter on Capitol Hill. Amongst an impressive group of patient advocates.

  4. 27. velj 2018.

    First stop for raising awareness for

  5. 2. ožu 2018.

    After a long, productive week. This two year old advocate was just ready for a nap. Thank you for an incredible Rare Caucus Briefing

  6. 26. velj 2018.

    “[People with rare diseases] need the OPEN Act passed, and you need it passed yesterday” — Michael Manganiello at

  7. 27. velj 2018.

    is a champion of the Living Donor Protection Act. Had the chance to thank her staff on behalf of patients and discuss advancing therapies for rare disease

  8. 28. velj 2018.

    Today is Rare Disease Day and we have been having a great Rare Disease Week on Capitol Hill, helping give patients a voice. Thanks to all our sponsors, like for their support

  9. 27. velj 2018.

    Alpha-1 Advocate Ken Richmond at the office of Sen Mark Warner where Access to Precision Medicine Act (H.R.5062) was discussed.

  10. 27. velj 2018.

    Got to meet with my congressman, staff to advocate for patients and thank him for being part of rare disease congressional caucus

  11. TODAY is WORLD RARE DISEASE DAY! Rare conditions like Klippel-Feil need research, treatments, understanding 4 LIFE.

  12. 27. velj 2018.

    Thank you to Senate Minority Leader staff for meeting with us to discuss needs of rare and patients

  13. 27. velj 2018.

    Thank you for supporting rare disease legislation! – mjesto: United States Capitol Building

  14. 27. velj 2018.

    UofL child neurologist Chris Barton and advocate from CA. We're here for the same reasons, advocating for children with SMA and other neurologic conditions. @UofLPhysicians

  15. 27. velj 2018.

    It never gets old. Finishing up a good . Thanks, everyone.

  16. 26. velj 2018.

    Sickle Cell Warriors showing support and letting there voices be heard at Rare Disease Week on Capitol Hill

  17. Five Ways YOU Can Participate in Rare Disease Week on Capitol Hill Remotely

  18. 26. velj 2018.

    The ADA Education & Reform Act H.R. 620 introduced by Rep. Ted Poe (R-TX) would seriously weaken Americans with Disabilities Act

  19. 27. velj 2018.

    Ohio rare disease advocates having their voices heard on Capitol Hill. Thanks to the offices of and for their time and hope you’ll support legislation to help rare disease patients

  20. 26. velj 2018.

    Day one underway. All participants welcome to attend the PPA reception tonight at the Washington Court Hotel!!!

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.