IPOPI, the International Patient Organisation for Primary Immunodeficiencies, is the Association of national patient organisations dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency (PID) patients worldwide.

The International Nursing Group for Immunodeficiencies (INGID) was formed in 1994 by nurses who were working with children and adults diagnosed with primary immunodeficiency disorders.

The Immune Deficiency Foundation (IDF), founded in 1980, is the national non-profit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with PI through advocacy, education and research.

The European Society for Immunodeficiencies (ESID) is a non-profit organization whose main objectives are to facilitate the exchange of ideas and information among doctors, nurses, biomedical investigators, patients and their families concerned with primary immunodeficiency diseases.

The Jeffrey Modell Foundation is a public charity devoted to early and precise diagnosis, meaningful treatments, and ultimately, cures – through clinical and basic research, physician education, patient support, advocacy, public awareness and newborn screening.

HAEI – International Patient Organization for C1-Inhibitor Deficiencies – is a global organization dedicated to raising awareness of C1 inhibitor deficiencies around the world. It is a non-profit international network of national HAE patient Associations.