Marfan Syndrome Organizations
Marfan Assoc UK our goal was to increase awareness amongst the medical profession, thus saving lives through early diagnosis, whilst providing support for patients, their families and medical professionals around the world.
www.marfan-association.org.uk
Marfans Research Foundation originated in the Mooncoin / Kilmacow area in County Kilkenny. It was set up by family and friends of the McGrath family from Kilmacow – who are directly affected by Marfan Syndrome. Marfans Research Foundation was set up to raise funds for research on the cause and treatment of Marfan Syndrome and also to raise awareness of this condition.
www.marfansresearchfoundation.ie
Internation Federation of Marfan Syndrome Organizations (IFMSO)
The International Federation of Marfan Syndrome Organizations (IFMSO) has launched its web site in order to serve people with the Marfan syndrome around the world. The Marfan syndrome is a potentially life-threatening disorder of connective tissue that affects many body systems. Approximately 1 in 5,000 people are affected worldwide regardless of sex, race and ethnicity.
www.marfanworld.org
National Marfan Foundation
Web site of the National Marfan Foundation located in the U.S.A. Contains information about Marfan Syndrome and the Foundation, and email addresses of people with Marfan Syndrome.
www.marfan.org
German Marfan Association
Web site of the German Marfan Association located in Germany.
www.marfan.de
Polish Marfan Association
Web site of the Polish Marfan Association located in Poland.
www.marfan.pl/
Slovak Marfan Association
Web site of the Slovak Marfan Association.
http://marfan.szm.sk/
Swedish Marfan Association
Web site of the Swedish Marfan Association located in Sweden.
www.marfanforeningen.se
Swiss Marfan Association
Web site of the Swiss Marfan Association located in Switzerland.
www.marfan.ch
Marfan Syndrome Information
Your Genes, Your Health -- DNA Learning Center
Detailed and very well done presentation of information about Marfan Syndrome. Requires the Flash Player plug-in to view. Well worth a look.
www.ygyh.org/marfan/whatisit.htm
Stanford University Center for Marfan Syndrome
Information about the Center and about Marfan Syndrome.
http://marfsan.stanford.edu
Canadian Adult Congenital Heart Network
Web site of the Canadian Adult Congenital Heart Network, Toronto Congenital Cardiac Centre for Adults, and International Society Of Adult Congenital Cardiac Disease.
www.cachnet.org
Jeanette Navia's Marfan Syndrome Web Site
Web site of Jeanette Navia, a woman with Marfan Syndrome. Contains information about Marfan Syndrome and email/web site addresses of people with Marfan Syndrome.
www.widomaker.com/~jnavia/
L' associazione Vittorio per la Sindrome di Marfan
Web site of the Vittorio Association For Marfan Syndrome. Located in Torino, Italy. Web site contents is in Italian.
www.tarantini.com/marfan/
OMIM - Online Mendelian Inheritance in Man
This database is a catalog of human genes and genetic disorders. The contents is very detailed and is intended for use primarily by physicians and other professionals concerned with genetic disorders, by genetics researchers, and by advanced students in science and medicine.
www.ncbi.nlm.nih.gov/Omim/
"Vittore Buzzi" - Italian Marfan Clinic
www.marfanclinic.it
More Interesting Links
www.genetics.ie
www.mater.ie
www.irishheart.ie
www.grdo.ie
www.eurordis.org
www.heartchildren.ie
www.olhsc.ie
www.communityfoundation.ie
www.croi.ie
www.eurordis.org
