Marfan / Ehlers-Danlos Syndrome Resources / Support
The Marfan / Ehlers-Danlos Syndrome Clinic team at Cincinnati Children's Hospital Medical Center recommends the following resources for more information about Marfan syndrome and Ehlers-Danlos syndrome.
Ehlers-Danlos Syndrome Resources
Ehlers-Danlos Syndrome National Foundation
3200 Wilshire, Suite 1601, South Tower
Los Angeles, California 90010
Email: staff@ednf.org
Ehlers-Danlos Syndrome Today
PO Box 88814
Seattle, WA 98138-281
253-835-1735
Email: info@edstoday.org
Marfan Syndrome Resources
NMF: National Marfan Foundation
382 Main Street Port Washington, NY 11050
800-8-MARFAN
TEL: 516-883-8712
FAX: 516-883-8040
Email: staff@marfan.org
The definition of a "Marfan Syndrome and Ehlers-Danlos syndrome clinic" varies greatly from institution to institution. Anyone contacting these institutions should make personal inquiry as to the nature and scope of services provided, the availability of specialists associated with the various body systems affected by the Marfan Syndrome, the coordination of care across the many departments in which the appropriate specialists may be located, and all related cost and insurance issues.
