What is Marfan Syndrome. Hi I am a18 Yrs old who has Marfan Syndrome I was told I had this when I was 4 years old.

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What are Related Conditions.

Marfan syndrome support groups. Marfan syndrome Support Group. We understand the road you are travelling whether that be first hearing of Marfanrelated condition just diagnosed or living with the condition. So I have lived with it for some time now.

Marfans Syndrome Group 656 members Marfan Syndrome UK Forum 432 members Marfan Network Australia 348 members Marfan Syndrome Disorder Australia 251 members Marfan Syndrome Canada Support Group 190 members Texas Marfan Syndrome and Related Disorders Community Group 171 members Treat Marfan Syndrome with Love 144 members Other. We hope you will find our site helpful. This group is for Canadians looking for support and information about their Marfan syndrome diagnosis.

We offer phone and online support groups for families coping with Marfan syndrome and related conditions. Marfan Syndrome Support Group. Support group for patients families and friends affected by Marfan Syndrome and Loeys-Dietz Syndrome in the North and South of.

We can help you find local support. WHAT IS NEONATAL MARFAN SYNDROME. Marfan syndrome is a connective tissue disorder characterized by unusually long limbs.

I dont let it affect. There are many good support groups for people with Marfan syndrome. You can get involved in all or some of the events held by your local group.

We can connect you with local community groups which are located all over the country. The Marfan Association Queensland MAQ is a volunteer run support group for people and families affected by Marfan syndrome and related conditions. Marfan syndrome is a life-threatening genetic condition and an early accurate diagnosis is essential not only for people with Marfan syndrome but also for those with related conditions.

The most serious conditions associated with Marfan syndrome primarily involve the cardiovascular system. Marfan syndrome may cause leakage of the mitral or aortic valves that control the flow of blood through the heart. Support Educate Research 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 - Contact us Covid-19.

Cant Find a Group. It is our hope that we can show our support to you and your family through friendship and people to listen. How is the Body Affected.

Marfan Syndrome Support Group Ireland. We are a not-for-profit charitable recipient group and donations to our organisation can be tax deductible. The musculoskeletal system ligaments and muscles and ocular system eyes are also affected.

Phone Support Groups Find a Mentor Become a Mentor Join our Online Community Ask Our Help Center. 1306 likes 110 talking about this. Our members come from all regions of Queensland and the northern areas of New South Wales.

Marfan Syndrome Canada Support Group has 568 members. Local Support Groups. Marfan Syndrome Support Ireland.

Our annual conference brings together the entire community for four days each year to learn about the latest research get questions answered by the leading experts and form new friendships. Were akin with Abraham Lincoln Jonathan Larson Rachmaninoff and many others. Groups meet once a month unless otherwise noted.

Marfan Syndrome has 13474 members. I am a person that has lived with the struggles of Marfan Syndrome all my life. 126 or by email.

Marfan syndrome is an inherited condition that affects the connective tissue of the heart and blood vessels cardiovascular system. Welcome to the Marfan Syndrome Support Group website. Virtual support groups are a great way to connect with others in the Marfan syndrome and related conditions community.

In some areas we have individual support volunteers rather than a group. The Marfan Trust charity. Other Ways to Get Support.

Many groups focus on social and support events while other groups also hold fundraising and awareness events. There are more than over 100 different groups such as The Parents Place Teen Spot Young Adults 18-35 Group Family Member Support and Living with Marfan 30-40. Either by calling 800-8-MARFAN 800-862-7326 ext.

Marfans is a rare syndrome that is not well known to say the least. International Federation of Marfan Syndrome Organizations. They are held by zoom but you can also just call in if you do not have access to a computer laptop tablet or other mobile device and wifi.

Knowing the signs of these conditions can save lives. Marfan Syndrome Support Group. What are the Signs.

This is not a group for medical professionals. Join now Become a member. Marfan CONNECT is our online community that allows people impacted by Marfan syndrome and other related disorders to link with others through online groups and forums.

This is a support group for people with Marfan syndrome and related conditions and their family members. Please read over group rules before posting.