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/