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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
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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
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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
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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