Tag: NIH

A total of 83 posts are filed under NIH
Proposed RARE Act Seeks to Address Common Challenges Rare Disease Patients Face
Rare Daily Staff Two Congressmen have introduced the Rare Disease Advancement, Research, and Education (RARE) Act, a bipartisan bill that… Continue Reading
21st Century Cures Act passed by the House today, OPEN ACT dropped from bill
Source On Friday, November 25, leaders of the House of Representatives Energy and Commerce Committee and Senate Health, Education, Labor and… Continue Reading
Relapsing Polychondritis Awareness and Support Foundation Announces New Study with NIH
The Relapsing Polychondritis Awareness and Support Foundation, Inc. (RPASF) is extremely pleased to be able to make the following… Continue Reading
New Study Investigates “Touch Blindness” as Potential Genetic Mutation
Two young patients with a rare condition have helped scientists unlock a better understanding of our sense of touch and what researchers… Continue Reading
Global Genes Provides Over $100,000 in Scholarships
Global Genes, the leading global advocacy non-profit organization for patients and families fighting rare and genetic diseases, today… Continue Reading
Here Goes Hannah! Girl Heads to NIH For Treatment of Giant Axonal Neuropathy
12-year-old from Clifton Park heading to National Institute of Health for potential life-saving treatment Hannah Sames, 12, embarks on the… Continue Reading
Pompe Diagnosis Brings Relief After One Woman’s Long Search
On July 10, 2015, I was diagnosed with Pompe Disease. Pompe is a rare, multisystem genetic disorder that is characterized by absence or… Continue Reading

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