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Patient Stories

Featured Student: Scarlett Eagle

NORD’s Educational Initiatives team spoke with Scarlett Eagle, an undergraduate student at Iowa State University and NORD Students for Rare Club Leader. In this interview, Scarlett talks about her inspiration for starting… Read More

Healthline and NORD Announce Recipients of 2018 Stronger Scholarships

Washington, D.C., August 15, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, and Healthline Media, the second largest… Read More

NORD Invites Video Submissions on Advocacy Experience

Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call for video submissions on… Read More

Giving Spotlight:  Honoring Mom-Mom’s Legacy with Research and Awareness

 Editor’s Note: During the week of July 23-27, 2018, NORD featured pheochromocytoma as the Rare Disease of the Week in order to raise awareness for this rare type of cancer. The blog… Read More

Moving documentary on Joshua Frase Foundation, Nibs – the matriarch of the first ever MTM dog colony, and the power of patient advocacy

The Joshua Frase Foundation (JFF) is a non-profit organization founded with a simple yet seemingly unattainable vision: to find a cure for Myotubular Myopathy (MTM). The journey towards a cure started the… Read More