The Ehlers-Danlos Society

Non-profit OrganizationsNew York, United States51-200 Employees

The Ehlers-Danlos Society is a non-profit organization based in New York, focused on advancing research and education related to Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Its work centers on supporting the development of effective and equitable therapies and collaborating across stakeholders to improve the lives of individuals affected by these conditions. The organization serves a global community of people with EDS and HSD, researchers, healthcare providers, and partners seeking to enhance care delivery and understanding of these rare and often underdiagnosed disorders. In addition to its research and education efforts, the Society engages in partnerships and initiatives—such as collaboration with academic and clinical institutions to develop models of care and the management of legacy giving—reflecting its aim to influence both practice and policy in the field. The Society operates within the non-profit sector and emphasizes visioning a world where each person receives timely, appropriate treatment and support tailored to their specific needs.

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