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Archives for: February 11th, 2016

Running on Air for Rare Disease Day

Written by Heidi Bjornson-Pennell on February 11, 2016

“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, it makes it worth it.”

Mary has taken on what for most seems insurmountable – running races… Read More

The Undiagnosed: Orphans of the Rare Disease Community

Written by Paul Melmeyer on October 5, 2015

While the approximately 7,000 known rare diseases run the full spectrum of symptoms and experience, rare disease patients encounter many common obstacles. Rare patients face incredible difficulty finding safe and effective treatments, and even if such treatments exist, a multitude of reimbursement difficulties await.  Rare disease patients often wait years… Read More