Rare disease organizations
EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
Global Genes is dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally.
Rare Concierge can provide resources, education and important connections free of charge.
National Organization for Rare Disorders (NORD)
NORD represents all individuals and families affected by rare disease by working at the intersection of care, research, policy and community for all rare diseases.