The expected opening date of the EDNF Center is August 2014. An account for the EDNF Center has been set up. Donations can be dedicated to the EDNF Center through our donations form in the store by clicking here; in the "Notes" field, enter "EDNF Center" or "Clinic"; if mailing a check to the foundation, use the "memo" line. Thank you for your participation!
Ehlers-Danlos National Foundation: Who we are.
Nancy Hanna Rogowski (1957–1995) founded Ehlers-Danlos National Foundation (EDNF) in 1985. We are the world leader in knowledge about the group of genetic connective tissue disorders known as Ehlers-Danlos syndrome (EDS). EDNF is a 501 (c) (3) nonprofit organization; our members and volunteers are dedicated to creating tools, resources and guidance for those born with EDS by:
- Generating and distributing accurate and responsible information;
- Providing a network of support and communication; and
- Fostering and funding research.
Support for Living With EDS: It's what we do, every day.
For more than 25 years, we have been the authority for EDS: delivering recommendations for those seeking diagnosis of problems that have been a life-long mystery; offering advice and emotional validation for the newly diagnosed wrestling with what a genetic disorder means for them and their families; and providing tips for those living with EDS for years, including day-to-day inspiration and news. In recent years, EDNF has been building new community connections every day.
- Our Facebook page has grown from just over 1,000 to a bustling electronic village of nearly 8,000 people affected by EDS, with a potential reach through our fans to more than 2.2 million people. Join our Facebook page.
- Our EDNF Inspire Online Community has become one of the most active support sites on the Inspire network. Visit Inspire here.
- Our Learning Conference is now a truly annual event, and has broken previous records each of the past three years, rising to nearly 600 attendees in 2012.
- Our website impressions are skyrocketing, rising from a worldwide ranking around one million in 2010 to 679,644 in September 2012. Our bandwidth limit has been increased three of the past six months.
We are dedicated to quality patient support, and our numbers show this clearly. But support alone is not enough to achieve our mission.
We need your help:
We seek to improve the experience of EDS in our lifetimes.
Our Goal: Realizing the dream of physician training, clinical advancement, and research.
EDNF seeks your support in endowing a facility that will be the world center for EDS, from physician training and clinical practices to scientific research. The opportunities are boundless; you can help the lives of children and families by advancing the progress towards solving a genetic disorder that affects the fundamental tissue of the body.
There are a series of partnership and support levels that will ensure your participation is recognized. You have the chance to join us in this life-changing endeavor and improve our future, from site selection through scientific breakthroughs and beyond.
This is just the beginning. Our dream doesn't end with one center: we envision a global network of centers working towards a cure.
You can help our dream come true.