The National Marfan Foundation is a non-profit organization which helps people who have Marfan syndrome or a related disorder. They also help families and others who are affected by the disorder. The importance of the National Marfan Foundation can e determined by finding out what the syndrome is, who it affects, and what the foundation does.
What is Marfan Syndrome?
To understand what the Marfan Foundation does it is important to know about Marfan. The human body is a great balancing act. In a healthy body everything is in sync. A mutation in an important protein causes the body to make too much. The protein is important to the connection tissue and too much creates a problem. This problem is Marfan syndrome. The connection tissues hold the body together and helps control how the body grows. Since the connection tissue is found through out the body, the effects of Marfan syndrome can be found in a lot of places. Sometimes the syndrome affects the lungs and skin. Most often it affects the eyes, joints, bones, blood vessels and the heart.
Who does it affect?
Marfan affects about 1 in every 5,000 people. The syndrome does not discriminate and can be found in men and woman. It can be found in any ethnic group and any race. It is a genetic defect meaning it can be passed down from parent to child. Almost 75% of the cases of Marfan syndrome are genetic. The other 25% are spontaneous. However, people with Marfan have a 50/50 chance of passing the defect along to their child per pregnancy.
What does the National Marfan Foundation do?
The thirty year old non profit organization promotes research which helps improve diagnosis of the syndrome and improves treatment of the condition. They promote research to help find a cure from this syndrome. The foundation is able to do this by providing grants and fellowships. They also fight for government funding and policies to stop the syndrome. They support scientific and medical symposiums. They partner together with other organizations.
The National Marfan Foundation provides education to patients, families, healthcare professionals, and the general public. The foundation provides accurate and current information on Marfan and related disorders. They offer support services. They are able to provide personalized service via an information phone line and e-mail. The foundation has a great volunteer network which enables the organization to reach many local areas. The group also supports an annual conference, sends out a newsletter, and operates a website.
You can find out more about Marfan syndrome and the National Marfan Foundation by visiting their website. You can also call 1-800-862-3362.
National Marfan Foundation