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Established in 1985 by Founder Nancy Hanna Rogowski (1957 – 1995), we are a 501 (c) (3) Nonprofit Organization with over 2,000 members and over 40 local groups across America. Our local groups are run by volunteers and their families; they are the life blood of the organization and make a huge difference to those affected by EDS.
Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos Syndrome.
We do this by:
•Creating and distributing accurate information
•Providing a network of support and communication
•Fostering and funding research
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