Ultragenyx works side by side with many patient organizations that provide educational resources and support research to help people affected by rare and serious disorders.

Rare Disease Support Groups*

Global Genes

Global Genes is a leading rare disease advocacy organization. Its mission is to build awareness, educate the global community, and provide critical connections and resources that empower advocates to become activists for their disease.

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The mission of EURORDIS is to build a strong pan-European community of patient organizations and people living with rare diseases, to be their voice at the European level, and – directly or indirectly – to fight against the impact of rare diseases on their lives.

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National Organization for Rare Disorders (NORD)

NORD provides advocacy, education and other services to improve the lives of people affected by rare diseases.

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Caregiver Action Network

Caregiver Action Network

The Caregiver Action Network is a family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. It supports family caregivers through education, information, referral services, and advocacy.

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Everylife Foundation

EveryLife Foundation for Rare Diseases

The EveryLife Foundation for Rare Diseases is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy.

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Children Living with Inherited Metabolic Diseases (CLIMB)

Climb is the leading patient organization for Inherited Metabolic Diseases supporting thousands of patients worldwide with more than 700 Inherited Metabolic Diseases. Its mission is to raise awareness and provide bespoke support to families, patients and professionals to improve the lives of those affected by Inherited Metabolic Diseases.

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Disease-Specific Support Groups*

For more information about disease-specific groups, please click the disease states below.

If you are aware of any Tumor-induced Osteomalacia (TIO) groups, please contact patientadvocacy@ultragenyx.com.

If you would like to have your group added to the list, please contact patientadvocacy@ultragenyx.com.

*These organizations are an incomplete listing of rare disease support organizations 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.