Rare Disease Community & Advocacy

Rare disease policy advocacy, patient engagement, education, and programs supporting the community (formerly the EveryLife Foundation).

Beyond the Diagnosis uses art and storytelling to raise awareness of rare diseases and celebrate the children and families behind each diagnosis. Through traveling portrait exhibits in healthcare, educational, and public spaces, the organization promotes understanding, inclusion, and advocacy for the rare disease community.

An online community for people affected by rare disease to connect with patients, caregivers, and advocates, share resources, and participate in discussions.

Reliable, easy-to-understand rare disease information plus individualized help from information specialists who can identify disease resources, experts, and clinical studies.

A patient registry for people who have had genetic testing. Participants can share genetic test results and health information to help researchers understand how genetic changes affect health.

National rare disease advocacy, information, patient support, and policy education.

Education, connection, and advocacy resources for rare disease patients, families, and communities.

Programs connecting rare disease communities with athletes and sports leaders.