Craig Martin, CEO of Global Genes, discusses the organization’s recent collaboration with the Rare Disease Diversity Coalition (RDDC) on the upcoming RARE Health Equity Summit, being held November 17-19, 2021. 

As Mr. Martin explains, the collaboration with the RDDC was inspired by the recognition that some populations within the rare disease community, such as African American patients, are underserved by the medical industry. This is concerning as rare disease patients are already underserved, often waiting 5-7 years for a proper diagnosis.

The RARE Health Equity Summit is set to be an in-person event held in Philadelphia from November 17-19. This event was developed in order to gain a better understanding of challenges facing some underserved/underrepresented patient communities and establish next steps on how to address health inequities within the rare disease community. This event will connect stakeholders from the rare disease community to find ways to address inequities in rare disease patient care. A particular focus will be placed on shortening the diagnostic odyssey, reducing racial disparities in care, and building more inclusive research programs.

To learn more about this event, visit https://globalgenes.org/event/rare-health-equity-summit/ 

To stay up to date with other rare disease events and news, follow us on Twitter @CheckRare