Founded and staffed by HAE patients and HAE patient caregivers, the U.S. Hereditary Angioedema Association, Inc. (US HAEA) is a nonprofit patient advocacy organization dedicated to serving persons with angioedema. The Association provides HAE patients and their families with a support network and a wide range of services including physician referrals, and individualized patient support.

The Chronic Granulomatous Disease Association of America (CGDAA) is committed to advocating on behalf of patients, carriers, and families by providing clear, accurate, and independent news and information about CGD and advancing CGD research.

The Chronic Granulomatous Disorder Society (CGD Society) is based in the UK and was originally registered as a charity in 1991 under the name The Chronic Granulomatous Disorder Research Trust. Over the years, the charity has transformed from a small parent support group into a leading global source of information and support for Chronic Granulomatous Disorder (sometimes referred to as Chronic Granulomatous Disease).

The A-T Children’s Project is a nonprofit organization that raises funds to support and coordinate biomedical research projects, scientific conferences, and a clinical center aimed at finding a cure for ataxia-telangiectasia, a lethal genetic disease that attacks children, causing progressive loss of muscle control, cancer, and immune system problems.

The United States Immunodeficiency Network (USIDNET), is an NIH-funded research program of the Immune Deficiency Foundation (IDF), established to advance scientific research in primary immune deficiency diseases.

Chiesi manufactures Revcovi, the only recombinant adenosine deaminase (ADA) approved to treat ADA-SCID in the U.S.