Standing Up for Rare Disease Patients: Our 4-Year Journey

More than 30 million Americans- nearly 1 in 10-have a rare disease. For rare disease patients of color, racial disparities have caused a crisis.
We envision a world without health disparities in rare disease patient communities.
The RDDC is dedicated to addressing the plight of rare disease patients. These efforts are made possible through a network of partners including rare disease experts, patients, healthcare professionals, diversity advocates, and industry leaders. The RDDC working groups are the cornerstone of the work and are focused on 3 key areas: diversity in research and clinical trials, government regulation and policy and the patient, provider, and caregiver journey.
In the 4 years since its inception, the RDDC has collaborated on impactful content such as in-person conversations with advocates, clinical trial education videos and powerful webinars. It has co-sponsored the annual Rare Health Equity Summit and produced groundbreaking surveys. Coinciding with Rare Disease Day, RDDC hosts an annual event in Washington, DC, to raise awareness and support for individuals with rare diseases.
Join us in supporting the RDDC’s valuable work and mission. Learn more at rarediseasediversity.org.