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Rare Disease Week and Rare Disease Day® may only happen once a year, but they remind all of us at Vertex of the uncompromising commitment to patients we carry with us every day. It’s part of what drives us to create potentially transformative medicines for people living with serious and rare diseases. Each year, we take this opportunity to listen and learn from the more than 300 million people worldwide living with a rare disease to understand the unique challenges faced by members of the rare disease community. This includes deepening our understanding of the pervasive disparities in our health care system that often leave too many people of color living with rare disease behind.

Since 2020, Vertex has closely partnered with the Rare Disease Diversity Coalition to identify and advocate for tangible solutions that help address and ultimately reduce the disproportionate burden of disease faced by people of color. Spearheaded by the Black Women’s Health Imperative (BWHI), the Coalition aims to bring together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to address and alleviate health care disparities. These disparities can include barriers to diagnosis and limited access to care. This is only compounded by the fact that many genetic rare diseases, like sickle cell disease and APOL1-mediated kidney disease, disproportionately impact Black and Brown communities.

During Rare Disease Week last year, we hosted an inspiring panel discussion called “Healthcare Disparities and Rare Diseases” featuring Linda Blount, President and CEO of BWHI and steering committee member of the Coalition. We were also joined by Terry Wright, President and Founder of the National Organization of African Americans with Cystic Fibrosis (NOAACF) and an African American man living with CF who was not diagnosed until the age of 54; and Terry’s wife, Dr. Michele Wright, an award-winning author, speaker and success expert. This event was co-sponsored by our VIBE (Vertex Includes Boundless Ethnicities) employee resource network. We were grateful for the opportunity to hear directly from the rare disease community and learn more about what we can do to address these challenges.

As a founding sponsor of the Coalition, we work together to amplify the challenges faced by communities of color, and to identify and advocate for real solutions to those challenges. We’re honored to participate in several working groups dedicated to addressing delays in diagnosis, equitable access to clinical trials, and bringing needed awareness to rare diseases which impact these communities. In addition, Vertex partnered with the Coalition to host a webinar on APOL1-mediated kidney disease last December. The webinar brought additional awareness to the burden of disease, primarily in people who identify as African American, Afro-Caribbean and Latin American, and highlighted Vertex’s unwavering commitment to continued research in APOL1-mediated kidney disease.

These initiatives are just the beginning, and we know that taking on these challenges requires all of us to work together — that includes industry leaders, policymakers, health care professionals, advocacy organizations and patients themselves. On this Rare Disease Day®, I’m hopeful that together we can drive real, lasting change for the millions of patients of color living with rare disease.  

To learn more about how you can get involved and support the Rare Disease Diversity Coalition, visit: https://www.rarediseasediversity.org.


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