About Us

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.

EDNF National Office

1760 Old Meadow Road
Suite 500
McLean, Virginia 22102

P: (703) 506-2892
F: (703) 506-3266 

Website: http://www.ednf.org
E-mail: ednfstaff@ednf.org

Staff

Shane Robinson, Executive Director, srobinson@ednf.org
Anita Parker, Senior Director for Resource Development, aparker@ednf.org
Mary Katherine Saladino, Senior Manager, Events
Lauren Sawicki, Foundation Services Coordinator
Erin Price, Receptionist

Financial Information

Creating Knowledge
Building Community
Promoting Change