Frequently Asked Questions

How do you get a diagnosis?

If you think you may have Marfan syndrome you need your family doctor to refer you to a geneticist. Marfan screening clinics can be found within Regional Genetic Centres in the following locations: Marfan syndrome screening clinics.

How do I get help in planning an unaffected baby?

Initially, ask your GP to refer you to your Regional Genetics Unit 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 complex technique is available privately to all, but is expensive. Your genetic counsellor will refer you on if you are suitable for this technique.

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 doctor can provide a letter stating that you are mildy or moderately affected. This may reduce the cost of the insurance. If you are having difficulty in obtaining travel insurance, try a specialist medical insurer. These include:-

Orbis

Orbis offers travel insurance for people with impaired lives.
Tel No: 01424 220110
Website: www.orbisinsurance.co.uk

Freedom Insurance

Freedom is a specialist travel insurance company, offering quality pre-existing medical condition travel insurance.
Tel No: 01223 446913
Website: www.insurewithfreedom.co.uk

Cover My Travel

Cover My Travel offers travel insurance for many medical conditions that are often refused by other insurance companies.
Tel No: 0800 3895904
Website: www.covermytravels.co.uk