Rezultati pretraživanja
  1. 13. lip 2019.

    Glen O’Neill from Cure Sanfilippo Foundation talks about the Caregiver Preference Study

  2. 13. lip 2019.
  3. 13. lip 2019.

    Proud to be part of the here in Boston. Sharing ideas with leaders in the rare disease space – mjesto: Boston Marriott Long Wharf

  4. 13. lip 2019.

    - great to see patients on stage opening this conf in Boston: that’s a first!

  5. 13. lip 2019.

    “As we move towards curative treatments in , will see shift in value... while FDA approval was big investor risk 5yrs ago, today that has shifted to pricing/reimbursement.” Great discussion @

  6. We’ll be there! Our founder Rich will be a panelist on the Science Luminaries Keynote Thursday morning!

  7. 30. svi 2019.

    Looking forward to our VP of patient advocacy and engagement Irene Aquino () presenting at June’s Rare Disease Innovation and Partnering Summit. She’ll be sharing insights on the patient and caregiver journey.

  8. 13. lip 2019.

    Excited to be at the in Boston today! Give us a shoutout if you're here and want to meet up :)

  9. 13. lip 2019.
  10. 13. lip 2019.

    Bo Bigelow co-founder of the Rare Disease Film Festival introduces the Foundation for USP7-Related Diseases.

  11. 12. lip 2019.

    Attending this year’s in Boston from June 13-14? Catch our Chairman and CEO, , as a panelist on the Focus on Funding Panel & as the chair for the Partnering & Investment Track during the conference. Learn more:

  12. 4. velj 2019.

    Honored to be part of the Rare Disease Summit this year. Please reach out if you plan on attending in Boston this June! More information on my content to follow. .

  13. 13. lip 2019.

    Dr Beggs from Boston Children’s Hospital discusses X Linked Myotubular Myopathy

  14. Earlier today, Alexion’s Martine Zimmermann joined a distinguished panel of experts at the to discuss how internal and external partnering is fundamental in the field of rare diseases.

  15. Alexion’s Martine Zimmermann, Wendy Erler and John Reynders will be representing Alexion at this year’s , which kicks off today and will focus on partnering and innovation in rare diseases.

  16. 14. lip 2019.

    Mapping the patient journey is crucial to the identification & diagnosis of a rare disease. Our VP of Patient Engagement & Advocacy shared insights from her efforts in rare genetic disorders of at the .

  17. 13. lip 2019.

    Mary McGowan from and Lindsey Smith from catching up before the .

  18. 13. lip 2019.

    First panel at emphasizes the critical role and influential voice of an individual living with a within the rare disease paradigm. So glad to see , , , & on the stage!

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