Rare Diseases

Featured Articles : Rare Diseases

January 10, 2019

Supporting rare disease research at NIH

Tiina K. Urv, Ph.D., leads the Rare Diseases Clinical Research Network, part of NIH’s Office of Rare Diseases Research....

Rare Diseases
Andrea L. Gropman, M.D. researches urea cycle disorders with funding from NIH. She works at Children’s National Health System in the Washington, D.C. area.
January 10, 2019

What is it like to research a rare disease?

Andrea L. Gropman, M.D., studies rare diseases with support from NIH and the Rare Diseases Clinical Research Network. She...

Rare Diseases

Zoey Zalusky, right, was 19 years old when she passed away suddenly from a rare disease.
January 09, 2019

Zoey’s story: One family’s experience with a rare disease

In 2015, college student Zoey Zalusky was 19 years old with an exciting future ahead of her. She had a supportive, loving family,...

Rare Diseases