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A Rare Lysosomal Storage Disease
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  1. New Blood Test for Niemann-Pick Type C
    1-Aug-14 • 0 Comment
  2. World Rare Disease Day 2014
    23-Feb-14 • 0 Comment
  3. 12th Annual Niemann-Pick Disease Awareness Month
    2-Oct-13 • 0 Comment
  4. 2013 Hospital Hill Run Discount (40th Annual)
    17-Feb-13 • 0 Comment
  5. Happy Holidays
    28-Dec-12 • 0 Comment
  6. 2012 Niemann-Pick Disease Awareness Month
    6-Oct-12 • 0 Comment
  7. Road To Discovery 2012 – Greg Crawford
    6-Oct-12 • 0 Comment
  8. Discount Deadline Update for Hospital Hill Run
    17-May-12 • 0 Comment
  9. 20th Annual Family & Medical Conference
    19-Mar-12 • 0 Comment
  10. Rare Disease Day 2012
    28-Feb-12 • 0 Comment
  11. Happy Valentines Day!
    7-Feb-12 • 0 Comment
  12. 2012 Hospital Hill Run (discount)
    6-Feb-12 • 0 Comment
  13. NIH Clinical Trial of Cyclodextrin Update
    16-Dec-11 • 0 Comment
  14. Vegas Casino Night Update
    19-Nov-11 • 0 Comment
  15. Matthew Lesko in Town For Vegas Casino Night
    4-Nov-11 • 0 Comment
  16. Vegas in Kansas City Casino Night Fundraiser 11-11-11
    17-Oct-11 • 0 Comment
  17. The Doctors TV Show | Niemann-pick Type C disease | Gavin Lopez
    14-Sep-11 • 1 Comment
  18. 2011 NNPDF Medical & Family Conference
    17-Aug-11 • 0 Comment
  19. Midwest Classic Tickets fore Charity Event
    19-May-11 • 0 Comment
  20. Potential Breahthrough in Niemann-Pick Type C Research
    8-Apr-11 • 0 Comment
  21. About Us
    5-Apr-11 • Comments Off on About Us
  22. Not So Rare | Rare Disease Day February 28 2011
    24-Jan-11 • 1 Comment
  23. Welcome! Come Check Out Our Blog
    22-Jan-11 • 1 Comment
  24. Video Project for Niemann-Pick Disease 2011
    20-Jan-11 • 0 Comment
  25. NNPDF COLLABORATIVE STUDY – KAREN QUANDT, RN, MN
    8-Dec-10 • 1 Comment
  26. Video: What is Niemann-Pick Type C disease? Can you share?
    1-Dec-10 • 1 Comment
  27. Desmopressin (DDVAP) Infusions for Platelet Dysfunction Disorder
    29-Nov-10 • 0 Comment
  28. We’re Famous, Almost | Palm Connections and Mashable
    9-Oct-10 • 0 Comment
  29. October is Niemann-Pick Disease Awareness Month 2010
    6-Oct-10 • 1 Comment
  30. Impact of Niemann-Pick Type C
    21-Sep-10 • 0 Comment
  31. Your Vote Can Save Lives | Rare Disease
    5-Sep-10 • 0 Comment
  32. MyDunkTank.com Dare By Steve Hugunin | Niemann-Pick Type C
    31-Aug-10 • 1 Comment
  33. Need Your Vote. 30 Under 30 Event
    22-Aug-10 • 1 Comment
  34. Promising Therapies for Niemann-Pick Type C Disease
    9-Jul-10 • 1 Comment
  35. 37th Annual Hospital Hill Run
    13-Jun-10 • 1 Comment
  36. What is Niemann-Pick Type C?
    9-Jun-10 • 1 Comment
  37. Orphan Drug Designation for Cyclodextrin | NPC
    23-May-10 • 1 Comment
  38. Why refer to it as the “Childhood Alzheimer’s”?
    16-May-10 • 4 Comments
  39. Check out the Videos!
    12-Apr-10 • Comments Off on Check out the Videos!
  40. Canada Receives First Approved Treatment For Niemann-Pick Type C
    10-Apr-10 • 1 Comment
  41. Join Our Cause On Facebook!
    27-Mar-10 • 3 Comments
  42. Dementia in Our Kids – The Uninvited Thief
    26-Mar-10 • 5 Comments
  43. Why Rare Diseases OUR Important
    21-Mar-10 • 6 Comments
  44. FDA says Hold Off on Zavesca (Miglustat) approval.
    16-Mar-10 • 0 Comment
  45. Social Security Adds 38 New Medical Conditions that Qualify for Disability
    13-Feb-10 • 0 Comment
  46. UPDATE 2-US FDA panel backs new use for Actelion drug [Zavesca]
    11-Feb-10 • 0 Comment
  47. Historic FDA related drug advisory committee will meet | Zavesca
    22-Dec-09 • 0 Comment
  48. Today, there is no cure or effective treatment
    26-Nov-09 • 1 Comment
  49. New therapies – Niemann-Pick type C disease
    21-Nov-09 • 0 Comment
  50. Gene Therapy Halts Brain Disease in Two Boys
    25-Oct-09 • 0 Comment
  51. Dementia. It changes your life.
    24-Oct-09 • 0 Comment
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