About Us

Established in 1985 by Founder Nancy Hanna Rogowski (1957–1995), we are a 501 (c) (3) Nonprofit Organization with over 2,000 members. Our volunteers are the life blood of the organization and make a huge difference to those affected by Ehlers-Danlos syndrome (EDS).

Vision

By leading the search for Knowledge about EDS we are building a Community of people who work together to effect Change.

Mission Statement

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.

How do we do this?

Accurate information

The Professional Advisory Network reviews all information published on the website (excluding news). The Medical Professionals area contains the most detailed and comprehensive information available online about EDS. New articles are published as soon as they are approved. In addition to the material available on this website, EDNF also produces educational literature for patients and health care professionals. The Foundation's newsletter Loose Connections is published several times a year and offers articles on EDS, current research and human interest stories. This year's learning conferences is another great tool in getting the information out.

Support and Communication

EDNF provides a network of support and communication through our Facebook page and the EDNF Inspire Online Community message boards and contact database.

Research

In the past years, EDNF has spent over $140,000 for clinical research studies related to the early detection, diagnosis or treatment of patients with Ehlers-Danlos Syndrome. This is the first significant private funding of research into Ehlers-Danlos syndrome.

Brief History

EDNF was founded in 1985 by Nancy Rogowski. Today we have thousands of members.

In June 1997, EDNF co-sponsored a conference in France where top medical experts from around the world met to clarify the types of Ehlers-Danlos syndrome as well as the diagnostic criteria for each type. The report from this meeting was published in the American Journal of Medical Genetics. The report made the diagnosis of EDS simpler and more uniform.

In April 1999, EDNF sponsored a meeting at Banbury Center at Cold Spring Harbor Laboratory, "The Clinical and Biological Basis of the Ehlers-Danlos Syndrome". This meeting brought together researchers and clinicians from around the world in an effort to better define EDS from the molecular basis through its natural history (the presentation of the disorder over a person's lifetime).

In the summer of 2002, EDNF completed its first CD ROM based educational program for emergency room physicians. To date, over 7,000 CD-ROMs have been distributed free of charge to health care professionals and individuals affected by EDS. In 2005, EDNF started the Medical Resource Guide series to inform doctors about EDS generally and in specific medical areas.

EDNF has grown from one woman's efforts to find others with whom to share emotional support into a vital information link to and from the medical community. EDNF Board of Directors and Professional Advisory Network strive to support research and education in many ways in an effort to prevent disfigurement, crippling and premature death through early and accurate diagnosis.