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Patient Stories

Brandon Hudgins: 2017 Rare Impact Award Honoree


For 20 years, Brandon Hudgins has chased his dreams of being an elite athlete and has put the demanding sport of competitive running at the center… Read More

Christine Grube: 2017 Rare Impact Award Honoree

Last Hope and Love Ball  After being diagnosed with Giant Axonal Neuropathy (GAN), a rare genetic disorder, Christine (Chrissy) Grube volunteered to be the first patient… Read More

Beth Nguyen: 2017 Rare Impact Award Honoree

My ceo picMother, wife, nurse, patient, advocate, and leader; Beth Nguyen wears multiple hats, and not one loosely.

In 2007, before she began to experience health problems,… Read More

Ellie McGinn: 2017 Rare Impact Award Honoree


Ellie4thofJuly2016At only 9 years old, Ellie McGinn is driving research for a rare and fatal disease, has educated nearly 1,000 future doctors, successfully advocated for the… Read More

NORD Unveils “Do Your Share for Rare,” Year-long Campaign for Rare Disease Public Awareness

DoYourShare cover photoDanbury, Conn., February 28, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans… Read More