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Resources
Staying consistent with a glycogenGlycogen is a form of glucose that is stored in the body and broken down to be used for energy when it’s needed. storage disease type Ia (GSDIa) management regimen can be difficult, but you don’t have to go through it alone. Building a care team of providers you trust who are knowledgeable about GSDIa and the impacts it can have on all parts of your life can help you create a disease management plan that’s right for you. Reaching out to patient advocacy groups for support, connections, and updates can introduce you to a community of people who understand the unique challenges you face.
Glycogen Storage Disease Organizations*
Association for Glycogen Storage Disease (AGSD)
AGSD is a parent- and patient-oriented support group that is advised by a group of experienced medical professionals.
The Children’s Fund for Glycogen Storage Disease Research
The Children’s Fund for Glycogen Storage Disease Research is a public not-for-profit 501(c)(3) foundation that aims to make a difference in the lives of children and their families affected by GSDI.
Global Center for Glycogen Storage Disease (GSD)
The Global Center for GSD seeks to ensure the sharing of information from different parties about this rare disease. This includes researchers, doctors, and people afflicted with this disease.
Rare Disease Organizations*
Global Genes®: Allies in Rare Disease
Global Genes is a 501(c)(3) nonprofit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally.
EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community.
National Organization for Rare Disorders (NORD)
NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives.
*
These organizations are an incomplete listing of rare disease advocacy groups and are not controlled by, endorsed by, or affiliated with Ultragenyx Pharmaceutical Inc. The list is meant for informational purposes only and is not intended to replace your healthcare professional’s medical advice. Ask your doctor or nurse any questions you may have about your disease or treatment plan. If you would like to have your group added to the list, please contact [email protected].