Rezultati pretraživanja
  1. 21. lis 2019.

    ⁩ presents informative panel on Social Media and Technology Platforms for Organizing Patients at . Social media is wonderful tool to educate & build a patient community, however, security protocol is needed to protect personal/health info.

  2. 22. lis 2019.

    Access to and coverage for expanded can be a critical piece in helping families avoid a diagnostic odyssey -

  3. One thing I was glad to see at the was a diverse array of speakers. I don’t think I saw a at any of the sessions I attended. Kudos to for their commitment to broad representation.

  4. 22. lis 2019.

    “We can’t leave any patient behind, especially patients with rare diseases.” Dr. Ned Sharpless, MD, FDA Acting Commissioner

  5. 22. lis 2019.

    We need to be able to measure impact across our areas to make change, who is with me?

  6. 22. lis 2019.
  7. 15. lis 2019.

    KAT6A mom, Dr. Natacha Esber, will be speaking at . Natacha is a physician and the director of science and research at the KAT6A Foundation. Her topic that is near and dear to her is “Our KAT6A Journey, From 1 Patient to an International Organization". See you there!

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  8. 22. lis 2019.
  9. 22. lis 2019.
  10. Thank you for hosting me today to address access to breakthrough innovations for those confronting rare diseases

  11. 24. lis 2019.

    There I am again, sitting in the background - these ladies were a hoot / smart all over the this year.

  12. 21. lis 2019.

    Panel discussion on data protection and social media. №1 target abuse is health insurance number. In Europe it's social security number and date of birth. Be aware of what you post!

  13. 21. lis 2019.

    25-30 million Americans are living with rare diseases. Theresa Mullin of the FDA talks about the Rare Disease Cures Accelerator which will provide infrastructure to get cures through to patients more quickly.

  14. I was privileged to speak at the this morning on the work the FDA is doing to support rare disease product development.

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  15. 21. lis 2019.

    Congratulations to the Najm brothers who are in DC today for the . They had two posters accepted for presentation at the conference: My Journey From Autism to KAT6A by Peter Najm, and KAT6A Syndrome Explained by a Sibling, by Paul and John Najm.

  16. 22. lis 2019.

    Lunch and Learn: Our KAT6A journey, from 1 patient to an international organization presented by Natacha Esber, MD, Science and Research Director – mjesto: Washington Marriott Wardman Park

  17. FDA is looking for patients and caregivers attending 2019 to sit for a photo portrait session. Stop by Booth 210 if you’d like a complimentary digital photo portrait and are willing to be featured in FDA and NORD communications about rare diseases.

  18. 21. lis 2019.

    Did you miss and presenting our editing research at ? Poster presentations continue tomorrow! Stop by poster 13 to chat with Casiana about + Poster 8 with Julian for .

  19. 21. lis 2019.

    Inspiring, honest opening keynote at by . ‘The promoter of the grit gene is caffeine’

  20. 21. lis 2019.

    Apropos of the upcoming breakout session on social media in rare disease patient communities, this article focuses on the increased sharing of the latest research discoveries in the MPN scientific community to speed up cures.

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