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Featured News
Blogs & Stories
Fighting Isolation When You Are One in a Million: Gabby’s Story in Honor of Rare Disease Day
By Gabrielle Z. A very special person once told me: “You are dealt the cards in this life that only you are meant to handle.” My name is Gabrielle but …
Living a Full Life After Diagnosis: Risa’s Story in Honor of Rare Disease Day
By Risa A. My name is Risa and I have Acromegaly. From the NORD Rare Disease Report: Acromegaly is a rare, slowly progressive, acquired disorder that affects adults, most …
Challenges Are Just Waiting for Solutions: Allison’s Story in Honor of Rare Disease Day
By Allison R. My ultra-rare disease, Cryopyrin Associated Periodic Syndrome (CAPS) has been isolating, defeating, and has made me feel helpless—but not hopeless. It has caused changes of career paths …