Finding a Condition-Specific Support & Advocacy Group

Hundreds of patient-centric, disease-focused groups work with patients, caregivers and families to ensure their voices are heard. Here are just a few:

The National Organization for Rare Disorders rarediseases.org/

The nation’s first rare disease support group with a wide variety of critical patient-support resources including the upcoming annual conference, and the most comprehensive website of rare diseases and resources related to each one.

EveryLife Foundation for Rare Diseases everylifefoundation.org/

Gives patients a voice on Capitol Hill. Facilitates cross-stakeholder strategic planning to develop solutions to problems with rare-disease drug development.

The Michael J Fox Foundation (Parkinson’s) https://www.michaeljfox.org/

The American Cancer Society www.cancer.org/

Women Heart (heart disease) www.womenheart.org/