Rezultati pretraživanja
  1. 31. sij

    Our CEO David Giljohann got a chance to talk with from about Exicure’s SNA technology on the latest episode of .

  2. 31. sij

    . discusses the company’s spherical nucleic acid therapies, how they work, and why they have the potential to treat a wide range of conditions including rare neurological diseases

  3. 29. sij

    Dror Bashan, CEO of Protalix Biotherapeutics, comes on our to speak about the company's efforts in pursuing therapies for unmet medical needs for diseases that include Fabry disease, cystic fibrosis, and other inflammatory diseases.

  4. 19. sij

    Catch up on what's new in with this week's episode, featuring Stanley Crooke. Here Crooke discusses his n-Lorem Foundation, a new nonprofit that is delivering free RNA-targeted therapies to rare disease patients.

  5. 17. sij

    Antisense pioneer discusses the genesis of his new organization n-Lorem Foundation and the challenges for regularizing the process of designing n-of-1 therapies for ultra-rare disease patients.

  6. 18. stu 2019.

    Podcaster, author and an inspiration to many. Hear how 's cross-country bike ride changed his relationship with Friedreich’s ataxia in a recent .

  7. 1. stu 2019.

    . and have both felt the isolation and chronic health condtions can bring. Hear how their organizationation, , is providing support for other young adults impacted by .

  8. 26. lis 2019.
  9. 19. lis 2019.

    Hear discuss the power of film and how he's using it to raise awareness for at DISORDER: The Rare Disease Film Festival.

  10. 18. lis 2019.

    . of : The Rare Disease Film Festival, on the power of film to raise awareness about rare disease, the films at this year’s showing in SF, and how the event fosters connections between patients and researchers

  11. 13. svi 2019.

    In a recent , Meagan Cross of in Australia discusses how the Global Angelman Syndrome Registry is an opportunity for families to participate in research from home to inform the development of new treatments

  12. 10. svi 2019.

    From Listen to learn how TREND Community data is driving science and improving patient lives. How Two Mothers Discovered That a Drug for One Rare Disorder Might Benefit Another:

  13. 24. velj 2019.

    In the latest episode of our CEO speaks with about the success of technology & how Ionis is poised to continue delivering transformational medicines to people who need them

  14. 8. sij 2019.

    Have 20 minutes? Listen to this interview to learn how communities like ours are powering discovery and accelerating the path toward treatment for rare diseases. One catch: we aren't afraid of the word "cure."

  15. 27. stu 2018.

    In a new , Sean Gordon explains how a diagnosis inspired him to form the Rare Funding Team to match volunteers to rare disease organizations that need help with websites, social media & other resources

  16. 20. stu 2018.

    Traveling this week? Check out our podcasts for insights from advocacy leaders, researchers & biopharma executives

  17. 4. kol 2018.

    Recently was a guest at with , talking about what we’re doing at RDMD to accelerate research and treatments -

  18. 25. srp 2018.

    I love this podcast by with patient & advocate - highlights the great work of and importance of Athlete Advocates in the rare disease community

  19. 25. tra 2018.

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