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Dego’s Disease

Our beautiful daughter, Maia Lily Douglas, was born at Barnet...
My Journey with Degos

In the Fall of 2012, I developed unusual sores on...
Ernie, by Sue DuPont, of Albany, NY

Hello, My name is Sue DuPont, the mother of 22...
Judith and Degos

I am Judith’s husband and thought I should write our...
Julia’s story

Hi everyone, I’m so glad to finally be able to...

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8th Orphan Drugs & Rare Diseases

25th - 26th September 2018, Hyatt Regency Boston, Boston, MA, USA
NORD Rare Summit

October 15 and 16, 2018 Marriott Wardman Park2660 Woodley Rd NW Washington, DC 20008

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