Rare Disease

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Stories and updates from petition starters

FDA, Please Fairly Review the Only Potential Treatment for Barth Syndrome
Thank you for your advocacy, let's take this to the next level!Dear Allies,  Wow! Our initial goal for our Change.org petition was 10k signatures.  In a matter of two months, we nearly doubled …
November 17, 2023
Add Niemann Pick Disease Type A, B, and C to the Virginia Newborn Screening Panel
WOW!Thank you so much to everyone who has signed and shared this petition. Please continue to share online and in your community. VA c…
WOW!
September 19, 2023
Eli Lilly, Advance Mission to Support Debilitating Brain Disease With Proven Medication
Now the Real Work BeginsGuess what...? Your signature worked! The Aicardi Goutieres Syndrome Advocacy Association (AGSAA) has a November meeting with the …
Now the Real Work Begins
November 8, 2022

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