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The Marfan Association comprises of patients, their families and interested physicians. Annual Marfan information day, booklets, fact sheets, pamphlets available on Marfan syndrome. They support patients and their families through the trauma of diagnosis, disseminates information to lay folk and professionals and fosters research projects. There are sixty four local groups, and publications are printed twice yearly.
Marfan syndrome is an inheritable condition and can be life-threatening if not diagnosed. Patients can have heart, lung, scoliosis, and eye problems as it is a lack of fibrillin in the connective tissue.
There is also a twenty four hour answerphone: 01252-617320.
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