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Patient Stories

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Living with ALPS

When Nicole was six months old, her mother, Laura Roublick, knew something was not right. After Nicole’s first year check-up, her doctors sent them on a long journey filled with hospital visits to find… Read More

Tougher than an NFL Football Player

“That would have been the easy way, but I chose to fight every step of the way!”

Although Brenda Fregger was born with a rare genetic marker called HLA B27, it was not… Read More

Today is Rare Disease Day®

rdd-social-profileOn this day, join the 30 million Americans who are making the voice of rare diseases heard. Your participation on Rare Disease Day means… Read More

Running on Air for Rare Disease Day

“I want to shake up what people think is possible,” says Mary Kitlowski – “ both people with rare diseases, and people without. If I can make a difference by doing it,… Read More

NORD Establishes Rare Disease Patient/Caregiver Speakers Bureau

speakers-bureau-quoteThe National Organization for Rare Disorders (NORD) has established a Patient/Caregiver Speakers Bureau through which volunteers will share their stories to promote better understanding of… Read More