Organizations For Thoracic Aortic Aneurysms and Dissections

The John Ritter Foundation
The  foundation located in the U.S.A. is focused on thoracic aortic disease education, support, and research.

TAD Coalition
A group of organizations and individuals who share a common mission of preventing premature deaths due to thoracic aortic aneurysm and dissection.

Aorta Dissektion
Official webpage for the nonprofit patient association, Aortadissektion Föreningen Scandinavien, a public registered patient organization with members in Denmark, Norway and Sweden. The association was founded for the rare disease - aortic dissection.

ACTA2 Alliance

To advocate for patients and families living with ACTA2 and MSMDS; Uniting physicians, researchers, and families by furthering the knowledge and strengthening the pathway toward living a better life.

International Marfan syndrome Organizations

International 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.

The Marfan Foundation
Web site of the Marfan Foundation located in the U.S.A. Contains information about Marfan syndrome and the Foundation.

Association Francaise du Syndrome de Marfan (A.F.S.M.)
Website of the French Marfan Association

German Marfan Association
Web site of the German Marfan Association located in Germany

Marfan Association UK
Web site of the Marfan Association UK located in the United Kingdom

Polish Marfan Association
Web site of the Polish Marfan Association located in Poland

Slovak Marfan Association
Web site of the Slovak Marfan Association

SIMA Asociacion de Afectado Sindrome de Marfan
Web site of the Spanish Marfan Association

Swedish Marfan Association
Web site of the Swedish Marfan Association located in Sweden

Swiss Marfan Association
Web site of the Swiss Marfan Association located in Switzerland

L'associazione Vittorio per la Sindrome di Marfan
Web site of the Vittorio Association For Marfan Syndrome. Located in Torino, Italy

Additional Information & Resources:

Central & Eastern Ontario – Children’s Centres:

Information about Disability Programs: 

In some instances children and adults who are deemed disabled can apply for various assistance. 

  • 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.

  • 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.

  • Ospedale "Vittore Buzzi" - Italian Marfan Clini

  • 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.

  • 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.

  • Henson Trust is a type of trust designed to benefit disabled persons.  Specifically, it protects the assets (typically an inheritance) of the disabled person, as well as the right to collect government benefits and entitlements. It is best to consult a lawyer.

  • Genetic Alliance
    The Genetic Alliance, the largest international genetics coalition, builds partnerships to promote healthy lives for everyone impacted by genetics.

  • 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.

  • Marfan Life Forum 
    ASupport resource for patients, family members, friends affected by Marfan syndrome and related disorders to share information

  • Pectus Deformities Support Group Forum  
    A support resource for patients, families members and friends affected with pectus carinituum or excavatum to share information, stories, and support.