The EveryLife Foundation empowers the rare disease community by amplifying patient voices, driving public policy, and offering a wide range of programs that support advocacy, education, and access to treatments.

The National Organization for Rare Disorders (NORD) is a leading advocacy group supporting individuals and families impacted by rare diseases through education, resources, and policy work.

Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients, their families and disease communities globally.