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How can I get a diagnosis?

If you think you may have Marfan syndrome, you need your family doctor (GP) to refer you to a geneticist. Marfan screening clinics can be found within Regional Genetic Centres located around the UK. Ask to be referred to the one that makes the most sense to you. Also, take some of our information leaflets with you when you see your GP. 


Is there a cure for Marfan syndrome?

Currently there is no cure for Marfan syndrome, no matter how early in life the condition is diagnosed or how mild the symptoms are. The important point is that it is treatable and treatment is available for each of the health problems that can arise in Marfan Syndrome. The earlier the treatment is started, the greater the possibility of preventing complications. New medications are on trial, and promise to lengthen lifespan.


How do I get help in planning an unaffected baby?

Initially, ask your GP to refer you to your Regional Genetics Centre for genetic counselling. Prenatal diagnosis is available at 11 weeks of pregnancy if a mutation is found in the affected parents’ Marfan gene. Preimplantation genetic diagnosis using In Vitro Fertilisation (IVF), is available through the NHS for couples who do not have an unaffected child already. This technique is also available privately to all, but is expensive. Your genetic counsellor will refer you on to an Assisted Conception Unit if you are suitable for this technique. For more information, visit our page on Starting a Family.


How can I get tested for Marfan syndrome?

You will need a referral from your GP to a Regional Genetics Centre which are located around the UK. 


I have Marfan syndrome and want to go on holiday. Are there any specialist insurance companies who will insure people with pre-existing medical conditions?

Your GP can provide a letter stating that you are mildly or moderately affected or simply affected by your named health problems e.g. scoliosis. This may reduce the cost of the insurance. If you are having difficulty in obtaining travel insurance, try a specialist medical travel insurer. We have some insurers detailed at the end of our page on Travel Insurance Advice. Please be advised, these are just suggestions which may or may not work for you. We are unable to recommend any one particular company. 


The Marfan Trust is registered in England and Wales under charity number 328070 at Guy Scadding Building, Dovehouse Street, London SW3 6LY. Contact us at [email protected] or by phone on + 44 (0)20 7594 1605
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