PAN joins Rare Disease Diversity Coalition

The PAN Foundation today announced that they have joined the Rare Disease Diversity Coalition, a collective working to reduce racial disparities in the rare disease community.

The Black Women’s Health Imperative launched the coalition in 2020, and since then the group of health equity advocates, rare disease experts, and other leading healthcare organizations has worked toward achieving greater equality in the rare disease community.

The challenges of living with a rare disease are well documented. Currently, only about 10 percent of rare diseases have U.S. Food and Drug Administration (FDA) approved treatments. For communities of color, there are additional barriers, like underrepresentation in clinical trials, which means treatments may be developed without considering the health impacts on the omitted communities. This leads to broader racial disparities in access to care.

For example, the Black Women’s Health Imperative estimates that if true health equity were realized, Black women would see an increase in average life expectancy, fewer women would die from breast cancer, and there would be a 35 percent reduction in infant mortality rates.

“As a member of the Rare Disease Diversity Coalition, we are proud to join a growing group of like-minded organizations committed to working toward a world with true health equity,” said PAN President and CEO Kevin L. Hagan. “We look forward to collaborating to find evidence-based solutions and advocate for policies that move us closer to that reality.”

Through its more than 60 member organizations, the Rare Disease Diversity Coalition (RRDC) is the nation’s leading voice for alleviating the disproportionate burden of rare diseases on historically underserved populations.

“PAN plays an important role in advocating for access, affordability, and health equity for all,” said RDDC Executive Director Jenifer Waldrop. “Together we will continue to seek actionable solutions that improve health outcomes for historically marginalized populations living with rare diseases.”

Read more about PAN’s position on diversity in clinical trials and reducing barriers to care and our other policy positions.

About the PAN Foundation 
The PAN Foundation is an independent, national 501 (c)(3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic, and rare diseases with the out-of-pocket costs for their prescribed medications.  

Since 2004, we have provided more than 1 million underinsured patients with $4 billion in financial assistance. Partnering with generous donors, healthcare providers, and pharmacies, we provide the underinsured population access to the healthcare treatments they need to best manage their conditions and focus on improving their quality of life. Learn more at panfoundation.org.  

About the Rare Disease Diversity Coalition (RDDC)
Launched in 2020 by The Black Women’s Health Imperative, RDDC is a partnership of the nation’s leading rare disease experts, patient and provider organizations, and health equity advocates working to address the extraordinary challenges faced by historically underserved populations with a rare disease. Through research, advocacy, and collaboration, RDDC aims to advance evidence-based solutions to achieve greater equality within the rare disease community.