NIGMS Attends the RARE Patient Advocacy Summit


In September, the NIGMS Repository attended and hosted the Coriell booth at the Global Genes’ RARE Patient Advocacy Summit, in San Diego, California. Global Genes is an alliance of patient advocates, researchers, medical professionals, and collaborators, who work together to support and empower the rare disease community. This summit brought together rare disease patients, caregivers, thought leaders and other rare disease stakeholders from around the world to raise awareness and develop steps to improve the treatment of these diseases.

Dr. Deborah Requesens, Principal Investigator of the NIGMS Repository, was invited to speak on a panel entitled, “The New Normal: Patient Communities Driving Innovation”. She was joined by representatives from patient groups and research programs, including the KIF1A Organization and the National Center for Advancing Translational Sciences. Dr. Requesens spoke about a number of Coriell’s partnerships with patient advocacy groups, as well as collaborations with rare disease foundations, which allow us to work together to advance biomedical research.

“Here at the NIGMS Repository at Coriell, we strive to host samples from a wide range of heritable rare diseases, so that we may serve as a resource for research in these understudied fields”, says Dr. Requesens. “We are proud of our close relationships with disease organizations, and we rely on these ties to ensure that we are best able to help these communities contribute to the research process.” The Repository works with many rare disease groups and provides outreach material for affected families. The Repository continues to expand its collections year after year, and it is able to provide qualified researchers with the tools necessary to find treatments for these rare genetic diseases.

To learn more about the Global Genes and the RARE Patient Advocacy Summit, visit

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