Why Do We ROAR for RARE?

Rare disease patients and advocacy organisations are often asked what makes rare disease advocacy different? Here are just a few reasons we advocate so hard

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Rare Disease Day 2024 Video!

Today is the day that 400 million voices join together, in a collective call to action for rare disease. The #glycogenstoragedisease1b community joins in that

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GSD1b Connect Virtual Meet-Ups

In the spring of 2023, Sophie’s Hope Foundation and CureGSD1b started organizing and facilitating monthly support group calls for GSD1b patients and caregivers. The calls

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