Our three main aims are to: Support families affected by MFS by sharing experiences & information related to its diagnosis & treatment. Raise general awareness as, if left undiagnosed, MS can lead to life-threatening health issues. Marfan is an inherited disorder of the connective tissue due to a gene mutation. Abnormalities may develop in different parts of the body including the skeleton, eyes, lungs, heart & blood vessels. The syndrome may be first diagnosed in children, teenagers or adults. Approx 1 in 10,000 men & women of all races & ethnic groups have Marfan Syndrome.
Who can Join
Anyone with Marfan Syndrome, their families, carers, professionals & interested others. Also supporting interstate enquiries.
Email is preferable to arrange a mutually convenient time to speak.
Where we meet
Gold Coast & Brisbane based, face-to-face annually. Phone for more details.