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Patient Stories

Noah Victoria: 2016 Rare Impact Award Honoree

Noah Maria Victoria wrote her first poem at the age of 13 or 14 as a homework assignment.  She composed “The Window,” a metaphor for her journey and countless trips to Children’s… Read More

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