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/

About the Author

Steve Smith | President, Patient Advocacy, WCG

Steve Smith is a seasoned patient advocate with an extensive career in software, consulting, process transformation, health care systems and patient-focused drug development. He joined WCG as President Patient Advocacy in 2019 inspired by the incredible value to patients embedded in the wide range of WCG solutions that reduce the time and cost of clinical trials.

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