Equity in rare disease isn’t optional—it’s overdue. As a Black queer rare disease survivor, I’ve seen how systemic gaps in care, access, and research continue to harm historically excluded communities. This section shines a light on those gaps—and equips you with the data, language, and tools to challenge them. Because everyone deserves a fair shot at survival, dignity, and care that reflects who they are. Solidarity starts here.
Key Disparities to Know
Race & Ethnicity:
- Black and Brown patients face longer diagnostic delays, are underrepresented in genomic research, and often have less access to specialists and rare disease centers.
- African Americans have a 29% chance of finding a successful donor match—the least likely.
Sexuality & Gender Identity:
- LGBTQ+ patients frequently encounter bias, stigma, and poor provider understanding of their needs—especially trans and nonbinary individuals.
- Rare disease resources and clinical environments are rarely tailored with inclusive language or culturally competent care.
Geography & Income:
- Rural patients often must travel long distances to reach care—and many policies don’t account for the cost or time burden.
- Medicaid disparities across states create major differences in access to treatment and support.
Reports & Tools
- RDDC’s “Inequities in Rare Disease” Report
This report reflects both the data and the lived experience. It’s a mirror, and a call to action. We need policy, research, and clinical trial infrastructure that centers people at the margins. Use this data to advocate for inclusive clinical trial design, targeted funding, strategic outreach, improved disaggregated data, and cultural competency training for providers. Speak up in coalitions and public comment periods to demand that diversity is not only counted but prioritized.