Mission

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 coinvestigators. 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.

Goals

Raise awareness of FMF within the scientific and medical communities and among policy makers, educators, caregivers, and the general public;

Serve as an information portal for the understanding and treatment of FMF and related disorders;

Participate in the global network of patient organizations representing FMF and related rare diseases;

Provide assistance to patients in finding appropriate specialist care, and gaining access to treatments;

Provide supportive assistance to FMF patients and their families in coping with a chronic inflammatory disorder including dealing with educational, employment, disability, and emotional issues; Bring the FMF patient community directly into the research domain through the Disease Community Viewpoint Research (DISCOVR) platform developed and introduced by the FMF Foundation that establishes patients not only as research subjects but as co‐investigators. Introduce a time sensitive survey system for polling patients on multiple topics, to communicate the needs and concerns of the FMF community, giving voice to patients and as a tool for change;

Identify new treatment strategies and assess the effectiveness of current treatments for FMF;

Represent FMF patients in policy issues such as governmental regulations barring access to effective treatments or eligibility for assistance programs.