Marfan Trust

Marfan syndrome is an illness that often hides in plain sight, with a ticking cardiac time bomb lurking unseen, requiring urgent surgical intervention. Marfan syndrome is an inherited disorder of the body’s connective tissue, manifesting in the eyes, skeleton and – more dangerously – the heart. We are the sole charity in the United Kingdom representing this condition.

The Marfan Trust is a charity dedicated to improving, and saving the lives of those with Marfan syndrome. Approximately 18,000 people in the UK are affected with Marfan syndrome but we know of only 3,000. Therefore, there is a real sense of urgency because diagnosis is the only way to save the life of a person and potentially the lives of other family members.

Living with Marfan syndrome requires numerous medical appointments, regular monitoring and tests. It involves risk of sudden death, and chronic pain management, and can be both physically and emotionally draining for those affected and their families. As a result, it’s vital to get an appropriate diagnosis, learn about recommended treatments, and take special precautions for physical activity and other situations, like pregnancy, as soon as possible.

Our collaboration with The Goodwill Partnership offers a new way of raising funds that will ensure The Marfan Trust can continue to meet the increasing demands for our unique support services over a longer period of time. We provide support, education and research for all who are affected, and their care team.

We are on a quest to find the Missing 15,000 U.K. Marfan folk living knowingly and unknowingly with the condition. Help us to Save Lives.

Thank you