May 4, 2024
Guest blog: Stop feeling guilty
Sara Satir, coach and mom of a child with epilepsy, on guilt and living guilt-free
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April 25, 2024
A Parent's Guide to Understanding Genetic Reports
For DNA Day 2024, we're thrilled to unveil a new family resource
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April 1, 2024
Argonaute Syndromes Patient Workshop 2024
The 2nd International Patient Workshop will unite families, researchers and clinicians in Denmark in August 2024
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February 16, 2024
February 29 is Rare Disease Day
🌍 Join the Movement for Rare Disease Day. Spread awareness and show support 🌍
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November 19, 2023
Our conference has been featured!
Article on the Networking Support Scheme of the EU's European Joint Programme on Rare Diseases highlights our conference
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September 22, 2023
Christmas gift
All families who participate in the Natural History Study by October 12 can now sign up for a Christmas gift!
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