Our friends

Check out how these 1,400 amazing organisations are raising awareness!

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World Without GNE Myopathy (WWGM)

Patient Group
Shubhraa Sinha

Worldwide Syringomyelia & Chiari TF

Patient Group
Beth Nguyen

Xenon Pharmaceuticals

Private company
Jodi Regts

XLH Australia

Patient Group
Sandy Bevc

X&Y Fertility

Health Professional
Bryan

Yale University School of Medicine

Health Professional

Yasmin elsamra foundation Debra Egypt

Patient Organisation
Hanaa El-Sadat

Yayasan MPS dan Penyakit Langka Indonesia

Country Organiser

Yo Nemalinica

Country Organiser
Christina Da Silva
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