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Searching For Treatments (2 of 2) raredisorders 14 views Emil Kakkis, MD, PhD, President and Founder, EveryLife Foundation for Rare Diseases; Warren Holmen, Vice President of Operations, Sigma Tau Pharmaceuticals
Searching For Treatments (1 of 2) raredisorders 18 views Nancy Goodman, Parent, Kids V Cancer; Catherine Collins, Parent, Parent Project Muscular Dystrophy; Kris Hempel, Parent, The Addi & Cassi Fund
Living With A Rare Disease: Perspectives raredisorders 26 views Terry Brown, Parent, Langerhans cell histiocytosis; Hanna Rapini, Parent, Undiagnosed Disease; Alison Reynolds, Parent, National PKU Alliance
Tim Cote, MD, MPH, Chief Medical Officer, National Organization for Rare Disorders raredisorders 30 views Tim Cote, MD, MPH, Chief Medical Officer, National Organization for Rare Disorders (NORD), Professor of Practice, Regulatory Affairs, Keck Graduate Institute of Applied Lif...
Introduction to the "Rare Riseases & Orphan Products" Congressional Staff Briefing raredisorders 18 views Welcome from Caucus Co-Chairs Reps. Lance, Crowley, or designee.
Rayven - Rare Disease Patient Story raredisorders 287 views Rayven, a rare disease patient shares her story about living with Cornelia de Lange Syndrome.
Lulu - Rare Disease Patient Story raredisorders 928 views Lulu, a rare disease patient shares her story about living with Paraneoplastic Syndrome.
LifeRaft Group - Rare Disease Patient Organization Story raredisorders 56 views LifeRaft Group, a rare disease patient organization shares their story about GIST (Gastrointestinal Stromal Tumor).
Janelle - Rare Disease Patient Story raredisorders 221 views Janelle, a rare disease patient shares her story about living with Devic's Disease.
Ian - Rare Disease Patient Story raredisorders 407 views Ian, a rare disease patient shares his story about living with Langerhans Cell Histiocytosis.

About NORD National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
NORD is the US sponsor for Rare Disease Day which happens on the last day of February each year.

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