Patient Contact Registry

We have created a very simple 1-minute questionnaire using Google forms to help us capture some very basic demographics and contact information for adult patients and caregivers of pediatric patients. This data will not be shared with anyone and will give us a more effective way to communicate with the GSD1b community about events, research updates, etc. Please fill out this form today so you are counted and don’t miss out on anything!

Ask the Expert
Webinar Series

You can now watch all of the Ask the Expert Webinars on the Sophie’s Hope Foundation/cureGSD1b YouTube page. Webinars are held quarterly and cover topics of interest to GSD1b patients, caregivers, clinicians and researchers. Be sure to register for the Patient Contact Registry to be included on the mailing list and follow us on Facebook and Instagram for news about upcoming webinars. All past webinars are available.

Sophie’s Hope Foundation And cureGSD1b In The News

Check out recent interviews and publications on the strides our organization is taking and the recognition it is receiving in the wider rare disease world.
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