Team members from the NIGMS Repository traveled to Philadelphia this month to attend the RARE Health Equity Summit, sponsored by Global Genes. This inaugural meeting was developed to address inequities in the field of biomedical research informing health care in the rare disease community, particularly as they affect marginalized patient communities. Individuals in underserved communities are substantially underrepresented in considerations in the biomedical research field, including in clinical research design and pre-clinical model development, leading to racial disparities in healthcare delivery.
The summit was produced in collaboration with the RARE Health Equity Leadership Council, in order to gain a better understanding of persistent gaps in diagnostic challenges for underserved and underrepresented patient communities, and align next steps on how to address health inequities of the rare disease community. Specifically, this event focused on shortening the diagnostic odyssey for those with rare diseases in marginalized communities, reducing racial disparities in care, and building more inclusive research programs.
Dr. Monica Webb Hooper, PhD, Deputy Director of the National Institute on Minority Health and Health Disparities (NIMHD), delivered the keynote address, championing focused research into racial health disparities in rare diseases, particularly centered on community engagement. Workshop breakout sessions allowed participants to discuss with each other the unique challenges that are faced in the wide range of subfields represented by attendees, as well as to develop strategies to overcome these issues.
