Equity

Equity in rare disease is overdue. This section shines a light on the gaps and equips you with the data, language, and tools to challenge them. Everyone deserves a fair shot at survival, dignity, and care that reflects who they are. Solidarity starts here.

We support underrepresented patients, families, and community members within the following criteria:

  • Below the federal poverty limit versus above the federal poverty limit

  • Black, Indigenous, People of Color (BIPOC) versus non-BIPOC

  • Hispanic/Latino versus non-Hispanic/Latino

  • 2SLGBTQIA+ versus cisgender/heterosexual

  • Rural versus urban/suburban

diverse group of people in abstract colors

  • 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, which is the least likely of any group.

Race & Ethnicity

Indigenous & Native American
Black & African American
Hispanic & Latine/Latinx
Asian & Native Hawaiian/Pacific Islander

Sexuality & Gender Identity

  • 2SLGBTQIA+ 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.

2SLGBTQIA+ Resources

  • 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.

Geography & Income

Financial Resources

General Equity Resources

  • Created by the Rare Disease Diversity Coalition (RDDC), this report reflects both the data and the lived experience. 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. Read it here

  • Learn more

Intersectionality

Intersectional advocacy means recognizing that people affected by rare diseases do not live single-issue lives. Our identities including race, gender, sexuality, socioeconomic status, and disability, intersect and shape the way we experience health care, access resources, and navigate systems.

For 2SLGBTQIA+ individuals in the rare disease space, those intersections often bring:

  • Delayed diagnoses due to stigma or provider bias

  • Underrepresentation in clinical trials and research

  • Lack of culturally competent care

  • Barriers to fertility preservation, gender-affirming care, or insurance coverage

  • Isolation within mainstream patient communities that don’t reflect their lived experiences

Intersectional advocacy fights for systems that are inclusive of all identities, not just in theory, but in practice.