Rezultati pretraživanja
  1. 31. sij
  2. 31. sij

    "Alexander's Film" premiered at the recent Annual Family Conference. The piece feat. Alexander Key and his parents who discuss their lives before & after Alex was diagnosed with NPC.

  3. 31. sij
  4. 30. pro 2019.

    "No one is competing with someone else. It's all about giving each other a hand up." See what the RARE Foundation Allaince is all about.

  5. 18. pro 2019.

    . of on the lack of treatments for : "There is a really big gap between what's technically possible and what we have available. And unfortunately, we are not always incentivized to solve those problems."

  6. 24. ruj 2019.

    A big thank you to for another fantastic Rare Patient Advocacy Summit last week in San Diego. Our team appreciated the opportunity to meet with so many advocates who shared what means to them.

  7. 24. srp 2019.

    Representation matters. We're proud to support the DISORDER Film Festival. You can join us.

  8. 16. srp 2019.

    Thank you for helping the community have such fantastic videos! Running the first pivotal trial ever in CDD was already a major contribution, and helping us put together meetings like the one show you 💜

  9. 25. lip 2019.

    I wish life was easier for him but having a degenerative movement disorder is all he's ever known. Does he realize how & he is? Getting steps in on a beautiful sunny morning.

  10. 22. svi 2019.

    Congratulations to for 10 years of empowering patients & caregivers to educate legislators & regulators about the unmet needs of the community

  11. 27. tra 2019.

    Gets me every time. These two... I know what my wish is. ⁦

  12. 17. tra 2019.

    Happy ! Meet KIF1A warrior Mario from Spain. KIF1A may take away his ability to walk and cause him to fall down several times a day, but he is a pro motorbike driver! When there's a wheel, there's a way.

  13. 5. tra 2019.

    "It doesn't do us any good to sit inside and wallow in it. It's better for us to go out and talk about it." One family shares the powerful story of their son Tanner, who has deficiency disorder

  14. Today is . Show your support for the 350 million people worldwide who are affected by rare disease. We believe it is a moral imperative to increase visibility of families facing rare disease & drive advances that can bring them hope.

  15. 24. ruj 2018.

    Remember last year's RARE Patient Advocacy Summit? Be informed, be inspired, be there October 3-4!

  16. 21. kol 2018.

    Curious about RARE Patient Advocacy Summit? Check out video of highlights from 2017 & hear why people attend year after year: "there's always something that you can learn and there's so much gained from information shared here"

  17. 15. kol 2018.

    Happy ! Meet KIF1A Kid Hannah. She lives life all the way and isn't afraid to try new things. Check out this amazing interview where Hannah finishes the race!

  18. 28. srp 2018.

    Amazing community striking out epilepsy with my pal from the Alliance and

  19. 28. velj 2018.
  20. Four Arizona families live with , and the & are helping to raise awareness about the syndrome.

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