Since 1985, EDNF has led the way in the Ehlers-Danlos Syndrome community, providing a network of support, information resources and outreach.
This year's Learning Conference will be July 21–23, 2011, at the Hilton Baltimore in Baltimore, Mariyland. For more information, please visit the conference website.
From Live Well, Fall 2009
LiveWell is a publication that is created by Doctors Community Hospital to help educate the residents of Prince George’s County about relevant health topics (which are written for the layperson) as well as services offered at the hospital. Roughly 220,000 copies are distributed each printing. In addition, the publication highlights upcoming hospital-sponsored events and free support groups. The general idea is that by providing patients with important health information they will be proactive in the care they receive and be able to live healthier, longer lives.
In the Fall 2009 issue, Dr. Fraser Henderson and patient, Mackenzie Mathis, were featured in the cover story. The article “Desperate for Answers” creates a compelling story—giving both the patient and treating physician perspectives in a case that baffled many physicians and robbed a 17-year-old young woman of her vitality and passion for dance. After being correctly diagnosed and treated through corrective surgery performed at Doctors Community Hospital, the patient is living life to the fullest once again and is example of not only the cutting-edge health services provided at Doctors Community Hospital, but also the experienced physicians who are affiliated with the hospital.
Visit the CSF chapter page for upcoming meetings and events »
Last year, on November 13, 2010, the CSF Night of Light Children’s Gala was held at Anderson House in Washington DC. The evening’s patrons were Her Majesty Queen Noor of Jordan; Lord and Lady Fairfax of Cameron; Lord and Lady Malloch-Brown; Hon. and Mrs. Christopher Burnham; and Mr. Randy Theken. Attendees included leaders in treatment of Chiari malformation and associated disorders from around the world. This exciting evening raised much needed research and program funds to further our mission, shining the spotlight on these poorly understood disorders.