This lifeline phone number is not NHS funded but relies on your donation so please give generously Click here for ways to make your donation.
“My GP doesn't know anything about Marfan Syndrome”
“I am a doctor in Afghanistan. My little daughter has Marfan syndrome. Where can I take her to have proper care?”
“I am ringing from Spain. I have come for my granddaughter because my son lives here now. He is in hospital with an aortic dissection.
“My daughter lives in Cuba, where can she can she go to tested for Marfan syndrome? She's afraid her son may have it too.”
In the last month, these and many similar enquires have reached us. We have helped them all with immediate advice followed up by information leaflets for both the patient and doctor. Our knowledge of the location of the nearest Marfan clinics both in the UK and worldwide enables us to recommend them locally.
Hotline Number is: +44 (0)20 8725 1189