Resources- Specific Diagnosis Card Catalog- Marfan Syndrome
Who to Contact
National Marfan Foundation
22 Manhasset Avenue
Port Washington, New York 11050
1-800-8-MARFAN
516-883-8712
516-883-8040 (fax)
E-Mail: staff@marfan.org
Web: www.marfan.org
The National Marfan Foundation was founded in 1981 by people who have the Marfan syndrome and their families. It is a voluntary organization that has three objectives. To disseminate accurate and timely information about this condition to patients, family members and the health care community. To provide a network of communications for patients and relatives to share experiences, support one another and improve their medical care. And to support and foster research.
Canadian Marfan Association (CMA)
Central Plaza Postal Outlet
128 Queen St. S. PO Box 42257
Mississauga, Ontario, Canada, L5M 4Z0
(905) 826-3223
Fax: (905) 826-2125
E-Mail: info@marfan.ca
Web: www.marfan.ca
The Canadian Marfan Association provides accurate, timely information about Marfan Syndrome to help prevent early death and disability, and works to improve the quality of life for Marfan patients in Canada, through comprehensive programs of education, support, and research. They assist patients and their families to live optimally with Marfan Syndrome by forming self-help groups nationally, which will foster improved physical and emotional health and thus enable affected families to seek and follow the most comprehensive health care regime possible.
CMA has available a chapter contact list of local chapters, and there is a chapter in each of Canada'a provinces. They publish a newsletter Newslinks, four times a year, and is included in membership fees. There are also other brochures, booklets, and a video "Marshall's Story" that are available, call or write for order forms.
Where to Go Chat with Others
Marfan-List
An unmoderated forum for anyone interested in the Marfan syndrome or related disorders. Subscribers may include patients with these connective-tissue disorders, family and friends of patients, researchers and health-care workers interested in the Marfan syndrome and related disorders, and anyone else wishing to know more about it. Any topic related to the Marfan syndrome and related disorders is appropriate for discussion.
Marfan Syndrome
This group is for support and awareness, meeting people who also have it and those who just want to learn about it, and just to talk about it with anyone.
Marfan Syndrome
Support group for people with Marfan Sydrome
Marfans
A group to help, support and educate the family and friends of people with Marfan's Syndrome. People with Marfan's are welcome.
Learn More About It
National Marfan Foundation: Fact Sheet
Connective Issues On-Line - Marfan Newsletter
Marfan Syndrome
from OMIM
Links
National Marfan Foundation Web Site
Marfan Association United Kingdom
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