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Today is FH Awareness Day: Celebrate On Twitter!

FH Awareness Day (est. 2012) is a campaign…

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2016 Patient Advocacy Summit: How to Tell Your Story
Daniel S. Levine Rare disease patients have such powerful stories to tell that they are capable of raising money, advancing legislation, or… Continue Reading
RARECast: Matchmaker Exchange Helps Rare Disease Community “Find Me a Find!”
  As databases containing the genetic information of individuals proliferate, an opportunity for physicians, researchers, and individuals… Continue Reading
Nebraska Boy with Headache Diagnosed with Rare Disease
What his mother first thought was a harmless headache landed 7-year-old Somolon Pyle in the hospital, where he fell into a coma and was… Continue Reading
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RDR: FDA Approves Cuvitru for Primary Immunodeficiency Disorders
By Andrew Black at Rare Disease Report The FDA has approved Shire’s Cuvitru  [Immune Globulin Subcutaneous (Human), 20% Solution] for… Continue Reading
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Duchenne Community Rejoices over FDA Approval of Eteplirsen!
CureDuchenne applauds the first-ever approval of a drug in the U.S. to treat Duchenne muscular dystrophy. The drug, Exondys 51… Continue Reading
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RARE Revolution Online Magazines Premieres Inaugural Issue
As a community, we are only as strong as our most prominent voices—and now those voices have another forum to be heard! The release of… Continue Reading
Meet the Speakers: Stephanie Gandomi Talks Genetic Counseling
  Working alongside the Global Genes team to help our patients find answers isn’t her only job. Stephanie Gandomi, MS, LCGC, Licensed… Continue Reading