GSD1b Strong Patient Spotlight Series: Ayla

Rare disease patients do not come with a handbook, and whether they are 30 days or 30 years old, there can often be very little instruction on how to live and thrive with their disease. Patients and caregivers learn how to advocate for their loved ones or themselves by trial and error, the knowledge from others in their community and by pushing providers for the right care. Check out one such example from Ayla, below, whose parents have been pushing for the right care since birth and are now seeing her thrive! Big thanks to Ayla and her family for sharing their story with us.

Ayla (Square) by Blair Schneider

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