The FMF Foundation is dedicated to improving the lives of FMF patients and decreasing the number of undiagnosed patients. Founder and President, Janine Jagger, M.P.H., Ph.D., was diagnosed with FMF in 2006. Dr. Jagger is an epidemiologist with a long career as a research scientist and professor in the school of medicine at the University of Virginia. Her connection to the patient community led to a recognition of the significance of information shared within patient communities and its value as a parallel resource for all areas of progress related to this rare disease. The Foundation formalizes an advocacy and research platform for FMF patients; a research platform in which patients are co‐ investigators. Connecting with FMF and rare disease patient networks around the globe, and drawing on expertise and resources within the FMF patient community and the scientific research community, the Foundation is dedicated to advancing all areas of progress in the diagnosis, treatment, and quality of life of FMF patients.