Marfan Syndrome Organizations

• 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 website contains contact information for Marfan organizations around the world and also an e-newsletter.
  (http://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.
  (http://www.marfan.org)
   
• Association Francaise du Syndrome de Marfan (A.F.S.M.)
  Website of the French Marfan Association
  (http://www.vivremarfan.org)
   
• German Marfan Association
  Web site of the German Marfan Association located in Germany.
  (http://www.marfan.de)
   
• Marfan Association UK
  Web site of the Marfan Association UK located in the United Kingdom.
  (http://www.marfan-association.org.uk)
   
• Polish Marfan Association
  Web site of the Polish Marfan Association located in Poland.
  (http://www.marfan.pl)
   
• Slovak Marfan Association
  Web site of the Slovak Marfan Association.
  (http://marfan.szm.sk/)
  
  SIMA Asociacion de Afectado Sindrome de Marfan
  Web site of the Spanish Marfan Association.
  (http://www.marfan.es)
   
• Swedish Marfan Association
  Web site of the Swedish Marfan Association located in Sweden.
  (http://www.marfanforeningen.se)
   
• Swiss Marfan Association
  Web site of the Swiss Marfan Association located in Switzerland.
  (http://www.marfan.ch)
   
• 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.
  (http://www.marfan.info)
   

Marfan Syndrome Information

•  Your Genes, Your Health -- DNA Learning CenterDetailed and very well done presentation of information about Marfan Syndrome. Requires the Flash Player plug-in to view. Well worth a look.
  (http://vector.cshl.org/ygyh/)

• Stanford University Center for Marfan Syndrome
  Information about the Center and about Marfan Syndrome.
  (http://marfan.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.
  (http://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.
  (http://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.
  (http://www.tarantini.com/marfan/)

• Clinical Operational Research Unit, University College London
  Marfan Syndrome Survey by This e-mail address is being protected from spam bots, you need JavaScript enabled to view it . Also has introduction to the project "The timing of Elective Aortic Root Replacement in the Marfan's Syndrome: Computerized decision support".
  (http://www.ucl.ac.uk/~ucahywc/)

• 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.
  (http://www3.ncbi.nlm.nih.gov/Omim/)
  • Marfan Syndrome
    (http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?154700)
  • Fibrillin-1 Protein
    (http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?134797)
  • Fibrillin-2 Protein
    (http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?121050)

• The Canadian Progress Club
  An all Canadian service club, founded in Toronto in 1922 that has grown to forty-seven clubs in eight provinces, whose mission is "Enhancing the quality of life of all Canadians, through community service, in the spirit of fellowship."
  (http://www.progressclub.ca)

  The Canadian Marfan Association gratefully acknowledges The Canadian Progress Club of Brampton, Buffy's Corner, for providing funding for Brampton Primary & Secondary Schools education program of distribution of a Marfan Syndrome video and guide.

• Ospedale "Vittore Buzzi" - Italian Marfan Clinic
  (http://www.marfanclinic.it)

Additional Information (not related to Marfan Syndrome)

• Canadian Health Network / Réseau canadien de la santé
  A new and growing network, providing access to the resources of leading Canadian health organizations and international health information providers. The resources identified here will help you take care of yourself and the people you care about. Health intermediaries will find an array of resources on prevention and health promotion.
  (http://www.canadian-health-network.ca/)

• CharityVillage
  CharityVillage is Canada's supersite for the nonprofit sector. This online service centre is dedicated to encouraging, supporting and servicing 175,000 Canadian charities and nonprofit organizations, and the millions of staffers, volunteers, donors and supporters.
  (http://www.charityvillage.com/)

• CanadaLegal.com: Wills/Estates/Probate/Trusts/Power of Attorney
  Links to Canadian Legal Resources on the Internet that deal with Wills/Estates/Probate/Trusts/Power of Attorney. When making your will, consider the Canadian Marfan Association.
  (http://www.canadalegal.com/search.asp?a=37&n=100)

• Genetic Alliance
  The Genetic Alliance, the largest international genetics coalition, builds partnerships to promote healthy lives for evryone impacted by genetics.
  (http://www.geneticalliance.org)

• Bereavement Ontario Network
  Bon is a network of individuals, business, groups and organizations in Ontario who, through the exchange of ideas, resources and energy, are dedicated to helping the bereaved and the dying.
  (http://www.bereavementontarionetwork.ca)

• Lupus Canada
  A Support Resource 'Helping People To Help Themselves'
  (http://www.lupuscanada.org/en/advokit/advokit.html )