The Marfan Association Queensland Inc is a family support group for families affected by Marfan Syndrome (MFS). We are a not-for-profit, charitable recipient group and donations to our organisation can be tax deductible. Our member families come from all regions of Queensland and the northern areas of New South Wales.
Our three aims are to:
*Support families affected by MFS by sharing experiences, and information related to the diagnosis and treatment of Marfans.
*Raise awareness with the general public and the medical profession of MFS as it is sometimes underdiagnosed and can lead to life-threatening health issues.
*Raise funds which are donated directly towards resources and research for MFS.
Marfan syndrome 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, the heart and blood vessels. The syndrome may be first diagnosed in children, teenagers or adults. Approximately 1 in 10,000 men and women of all races and ethnic groups have Marfan syndrome. The condition may be life threatening if not treated.
The main areas of concern should they go undiagnosed are a aortic dissection of the heart and dislocation of the eye lens. There are many other health issues associated with MFS which is a serious, lifetime chronic health issue.
Further medical information can be gained from The Clinical Nurse Consultant for Marfan Syndrome at Prince Charles Hospital Brisbane. Ph: 3139 6871
To contact us use the contact form. We thank you for your support and assistance in raising awareness of MFS.