One of our endeavors is to assist, help create and connect Marfan Syndrome communities throughout the world, communities which will address local issues and offer better guidance and support to their members, and which will work together in collaboration for our common cause.
It is estimated that nearly half of the people who have Marfan Syndrome are in fact unaware of their having the disorder. Without proper diagnosis and treatment, such people risk complications which can alter their quality of life and eventually lead to their death if not monitored and treated appropriately.
Because Marfan Syndrome is a rare disorder and all too often undiagnosed, it is considered one of the worlds silent killers. There are many countries where few doctors and medical practitioners know about the disorder, and unfortunately often fewer know how to effectively provide proper and accurate treatment. Therefore, it is vital to bring education and awareness not only to the general public, but to health professionals as well.
Separated by geographical distance, yet joined by the same concerns, we hope to combine our efforts and create a world wide network which will foster cooperation, create a better support system for those with Marfan Syndrome, related connective tissue disorders, and for families and friends of those affected. And equally important, we will disseminate information and promote education and awareness about all types of connective tissue disorders. Thus, united, we hope to better serve our causes and improve our chances of having our voices heard.
We welcome anyone who wants to become part of our community, be educated about Marfan Syndrome, and related disorders, and help us spread the word.