Rare Disease Support Groups*
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.Learn More
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.Learn More
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.
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.
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.
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 firstname.lastname@example.org
If you would like to have your group added to the list, please contact email@example.com.