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April 28, 2017

TOPIC: Featured News, Patient Stories

Brandon Hudgins: 2017 Rare Impact Award Honoree

Posted by Christina Jensen

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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 of his life.  Yet in September 2007, as a Division I college athlete attending Winthrop University, running became difficult when he began to experience health… Read More

April 28, 2017

TOPIC: Featured News, Medical, Research

Dr. Cynthia Tifft: 2017 Rare Impact Award Honoree

Posted by Christina Jensen

Screen Shot 2017-03-30 at 7.46.42 AMDr. Cynthia Tifft is working to solve some of the nation’s toughest medical mysteries.  As the Director of the Pediatric Undiagnosed Diseases Program at the National Institutes of Health,  she and her team strive to meet the unmet needs of children who have not able to achieve… Read More

April 28, 2017

TOPIC: Featured News, Patient Stories

Christine Grube: 2017 Rare Impact Award Honoree

Posted by Christina Jensen

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 injected with an experimental treatment so that other children with GAN, including her younger sister, Amanda, would have the chance at a better life.

Her parents,… Read More

April 27, 2017

TOPIC: Featured News, Patient Stories, Patients & Members

Beth Nguyen: 2017 Rare Impact Award Honoree

Posted by Christina Jensen

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, Beth had a job she loved as an emergency room nurse and was highly-regarded by her colleagues, married to her high school sweetheart, and the… Read More

April 27, 2017

TOPIC: Featured News, Medical, Patients & Members, Research

Dr. Matthew Might: 2017 Rare Impact Award Honoree

Posted by Christina Jensen

Matt MightTen years ago, Dr. Matthew Might was working in computer science and knew very little about the world of rare diseases. Today, he runs his own rare disease research institute at the University of Alabama, serves as a White House strategist for the Precision Medicine Initiative, and is an active… Read More