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.
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's 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.