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Searching For Treatments (2 of 2)

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Uploaded on Dec 12, 2011

Emil Kakkis, MD, PhD, President and Founder, EveryLife Foundation for Rare Diseases; Warren Holmen, Vice President of Operations, Sigma Tau Pharmaceuticals

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  1. 1

    NORD Part 3 of 3, Health care reform and the rare disease community.

  2. 2

    Rare Disease Day Video Library: Stefanie, Example

  3. 3

    Rare Disease Day Video Library: LAM and Madeline

  4. 4

    Rare Disease Day Video Library: ALS and Lynn

  5. 5

    Learn about the Cornelia de Lange Syndrome Foundation, Inc.

  6. 6

    Living with Congenital Hyperinsulinism

  7. 7

    Dr. Bloch on His Tourette Syndrome Research

  8. 8

    Dr. Leckman on His Tourette Syndrome Research

  9. 9

    Dr. Swenson - Rare Disease Research Story

  10. 10

    Living with Autoimmune Polyendocrine Syndrome Type 1

  11. 11

    Living with Langerhans Cell Histiocytosis

  12. 12

    Living with Devic's Disease

  13. 13

    LifeRaft Group on Gastrointestinal Stromal Tumors (GISTs)

  14. 14

    Living with Paraneoplastic Neurological Syndrome

  15. 15

    Living with Cornelia de Lange Syndrome

  16. 16

    Introduction to the "Rare Riseases & Orphan Products" Congressional Staff Briefing

  17. 17

    Tim Cote, MD, MPH, Chief Medical Officer, National Organization for Rare Disorders

  18. 18

    Living With A Rare Disease: Perspectives

  19. 19

    Searching For Treatments (1 of 2)

  20. Searching For Treatments (2 of 2)

  21. 21

    NORD's Abbey Meyers on Jack Klugman, patient advocates and the Orphan Drug Act

  22. 22

    NORD: 30 Years of Advocacy for the Rare Disease Community

  23. 23

    NORD's Next Generation of Rare Disease Advocates: Brooke Foster

  24. 24

    NORD's Next Generation of Rare Disease Advocates: Ian Brown

  25. 25

    NORD's Next Generation of Rare Disease Advocates: Megan Barron

  26. 26

    Prepare—Why NORD?

  27. 27

    Community—Why NORD?

  28. 28

    Historic—Why NORD?

  29. 29

    30 for 30 Brooke

  30. 30

    Thanksgiving Video ("This Thanksgiving")

  31. 31

    Happy Holidays from NORD

  32. 32

    Rare Disease Day 2014 (United States)

  33. 33

    NORD President Introduces FDA Webinars

  34. 34

    What is a rare disease?

  35. 35

    What is it like to have a rare disease?

  36. 36

    What is Rare Disease Day?

  37. 37

    Rare Disease Day 2014 Audio News Release

  38. 38

    Living with Polycythemia Vera

  39. 39

    Stephanie Foster's Story: For Everyone Living With An Undiagnosed Disease

  40. 40

    Rare Disease Public Service Announcement (2014)

  41. 41

    Cystinosis Community Celebrates Rare Disease Day through Med Art

  42. 42

    Senate Briefing: Rare Diseases in a Changing Healthcare Landscape

  43. 43

    Portraits of Courage

  44. 44

    Phillip Maderia from the Genzyme Boston Marathon Team

  45. 45

    Actelion Accepts Award at NORD's 2014 Gala

  46. 46

    Annette De Bow Shares Her MPN Rare Disease Story

  47. 47

    Bayer Accepts Award at NORD's 2014 Gala

  48. 48

    Catherine Davis Presents Partners in Progress Award to Genzyme

  49. 49

    Christie Campbell Speaks on Behalf of Senator Brown

  50. 50

    Genentech Receives Award at NORD's 2014 Gala

  51. 51

    Genzyme Receives Partners in Progress Award

  52. 52

    GSK Receives Award at NORD's 2014 Gala

  53. 53

    John Walsh Receives NORD Lifetime Achievement Award

  54. 54

    Pat Shares Her Pulmonary Hypertension Story

  55. 55

    Pharmacyclics Accepts Award at NORD's 2014 Gala

  56. 56

    Rino Aldrighetti on Orphan Product Development

  57. 57

    Bob Rosen Accepts Leadership Award for MPN Research Foundation

  58. 58

    Brooke and Brielle Present Award to Congressman Upton

  59. 59

    Sean Hepburn - NORD's 2014 "Portraits of Courage" Gala

  60. 60

    Rep. Fred Upton on 21st Century Cures

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