RARE Health Equity Report: Building a More Inclusive Rare Disease Community

For communities of color and other minoritized populations, finding and connecting with others in their disease community, being included in clinical trials, and receiving equitable and timely access to treatments and care from medical specialists add to the challenges they face.

The report draws from the key sessions and discussions from the 2022 RARE Health Equity Summit in Atlanta, part of our ongoing efforts to better understand and address persistent gaps in diagnosis and access to research and care for minoritized and underrepresented patient communities. In this report, you’ll read about:

• The essential role of collaborations between drug companies, clinicians, patient organizations, and community organizations in improving access and care in underserved areas.
• The importance of listening to what patients have to say and respecting the knowledge they have about their conditions.
• Why it’s essential for researchers, drug companies, and clinicians to make long-term relationships with underserved communities and understand why it will be essential to build trust with people over time.

Download the Report