Rezultati pretraživanja
  1. 21. lis 2015.
  2. 21. lis 2015.
  3. 21. lis 2015.

    Like all of communications, with branding be sure to avoid the "set it and forget it" mentality.

  4. 22. lis 2015.

    Best part of is meeting the patients and families

  5. 21. lis 2015.

    Rare Disease Conference-an inspiration, Jono Lancaster, Treacher Collins Syndrome

  6. 21. lis 2015.

    Patients are not only sitting at the table but setting it and sending out the invitations

  7. 22. lis 2015.

    RT : My Rare Inspiration for relentless advocacy. Just a mom fighting for her daughter

  8. 21. lis 2015.

    Peters: You can read about a disease in a textbook 1,000 times, but when you meet a patient, it stays with you.

  9. 21. lis 2015.

    Portraits of Courage - to hear us will help us

  10. 21. lis 2015.

    Hanging out with at . This guy gave an amazing talk this morning.

  11. 22. lis 2015.

    Closing of with Dr. Janet Woodcock - many minds have opened up.

  12. guidance a "good example in the important role patients...can play in developing new drugs” - Commissioner

  13. 20. lis 2015.
  14. 21. lis 2015.
    Odgovor korisniku/ci

    I spoke in front of a group of med students a few weeks back, about my rare disease w/ a positive response.

  15. 22. lis 2015.

    "Rare diseases need recognition, research, and results" Stephen Ostroff MD,Acting Commissioner, FDA

  16. 21. lis 2015.

    Persistence and collaboration lead to success. Good to see our friends!

  17. Sachdev of : important for patient communities to have robust registries w/ natural history & burden of disease

  18. 20. lis 2015.

    Heading to VA for Should be a great meeting

  19. 21. lis 2015.

    "at the end of the day, we are all patients" Jeffrey Sherman,MD, FACP, CMO & Vp R&D, Horizon Pharma

  20. 17. stu 2015.

    New on : Interview with Mike Watson of at

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