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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...

Upcoming Events

A Zeal of Zebras Gather in Harrisburg

National Organization of Rare Disorders (NORD)and Life Sciences PA promote Rare Disease Day. Rare Disease Caucus Co-Chairs Senators John Blake and Judy...
8th Orphan Drugs & Rare Diseases

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

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