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- This support group is for people with Marfan syndrome or a related condition who are interested in exploring various ways to deal with pain. This group meets on the fourth Thursday of every month at 7:00 PM Eastern.
marfan.org/resources/patients/virtual-support-groups/
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What is Marfan syndrome?
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What if my child has Marfan syndrome?
Is Marfan syndrome hereditary?
The Marfan Foundation is hosting a virtual group for Teens ages 13-18 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction with others with a similar diagnosis.
- Local Support Groups
We can connect you with local community groups, which are...
- Patients & Families
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- Local Support Groups
The Marfan Trust. - Supports those with Marfan syndrome and their families -. - Provides educational information to raise awareness of Marfan syndrome -. - Undertakes medical research to enable better treatment for patients -.
We can connect you with local community groups, which are located all over the country. Many groups focus on social and support events, while other groups also hold fundraising and awareness events.
Marfan syndrome is a disorder of the body's connective tissues, a group of tissues that maintain the structure of the body and support internal organs and other tissues. Children usually inherit the disorder from 1 of their parents.
- Who Has Marfan Syndrome?
- Know The Signs of Marfan Syndrome
- For More Information, See
About one in 3,000 people have Marfan syndrome in the UK. Most people with Marfan syndrome inherit it, i.e. they get the genetic mutation from a parent who has it. However, some people with Marfan syndrome are the first in their family to have it. This is called a spontaneous mutation. Each child of a parent with Marfan syndrome bears a 50% chance ...
Knowing the signs of Marfan syndrome can therefore save lives. Experts in Marfan syndrome estimate that nearly half the people who have the condition don’t know it. This is something we are working hard to change by raising greater awareness. See our page which details the signs of Marfan syndrome.
The Marfan syndrome section on our Resources pagewhich has detailed information on being diagnosed and living with Marfan syndrome
If your child has been diagnosed with the syndrome, you may be worried or upset about how it'll affect them. Speak to your GP if you or your child are finding the diagnosis difficult to cope with. They may be able to put you in touch with a support group through the Marfan Trust or refer you to a counselling service.
We offer a wealth of information for you and your loved ones about Marfan syndrome and related conditions, as well as special resources for children and teens. Our goal is to help you learn what you need to know quickly and support your next steps.
