RDDCTM convenes rare disease experts, patient organizations, health and diversity advocates, and industry leaders with a deep knowledge of the medical, industry, regulatory, and cultural challenges facing people of color with rare diseases.
Developed by the Rare Disease Diversity Coalition (RDDC) in collaboration with the Myasthenia Gravis Foundation of America (MGFA), this community-informed report explores how social determinants of health shape the experiences of people living with Myasthenia Gravis and those who support and care for them. Drawing directly from lived experience and patient-caregiver insights, the report highlights barriers to diagnosis, care, treatment access, and overall well-being across the MG community. Explore the report and accompanying social media toolkit to help raise awareness, amplify patient and caregiver voices, and support action toward more equitable MG care.
The Rare Disease Diversity Coalition (RDDC) and the Vasculitis Foundation are proud to present the report, Patient Recommendations for People Living With Vasculitis. Built on the insights and lived experiences of patients, healthcare professionals, and advocates, this report reflects the real needs and priorities of those living with vasculitis. The recommendations offer practical guidance to improve care, strengthen support systems, and promote equity. We encourage you to read and share this report with your vasculitis communities and networks to help ensure the patient voice continues to drive meaningful change.
The Rare Disease Diversity Coalition and Links2Equity are proud to present this paper, Health Equity for People Living with PNH: Creating a Leveled Playing Field. This paper was made possible through the insights and contributions of patient advocates, healthcare professionals, advocates, and others who have lived experience with Paroxysmal Nocturnal Hemoglobinuria (PNH). Please share with your PNH communities.
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