The Canadian Marfan Association has become the Genetic Aortic Disorders Association (GADA) Canada.
The Canadian Marfan Association (CMA) was established in 1986 at a time when the general population and even health care providers knew very little about the connective tissue/genetic aortic disorder known as Marfan syndrome (MFS).
Over the last decade a multitude of other genetic aortic disorders have been identified, all of which are associated with different gene mutations on various human chromosomes. The common denominator among all of these genetic disorders is the increased risk of aortic aneurysm and or dissection.
Treatment protocols and diagnostic criteria for persons diagnosed with MFS have been well established over the last thirty years. Recently discovered genetic aortic disorders, while similar to Marfan syndrome, are difficult to diagnose because these individuals may lack outward features.
Individuals with new aortic disorders are being treated according to MFS protocols, despite the fact that their features present differently.
In 2012 with the agreement of our Professional Advisory Board, the Canadian Marfan Association made an imperative decision to expand its scope to support all individuals diagnosed with genetic aortic disorders.
With this goal in mind, extensive work has been undertaken to change the Canadian Marfan Association to the Genetic Aortic Disorders Association (GADA) Canada.
GADA Canada was officially launched on September 26, 2015.
GADA will continue with our founder’s mission; we remain dedicated to saving lives and enabling a promising future for individuals living with Marfan syndrome and other genetic aortic disorders through education, awareness, support and research.
To succeed in these endeavours GADA is focusing on:
1. Promoting the creation of multidisciplinary aortic (MDA) clinics, centres of excellence for the treatment of all genetic aortic disorders across Canada.
2. Expediting the development of diagnostic criteria and treatment protocols for each and every genetic aortic disorder. In order to achieve this objective, in 2013 GADA organized an intensive three-day inaugural meeting that took place in Italy which resulted in the creation of the Montalcino Aortic Consortium (MAC). MAC is comprised of researchers and physicians who are specialists in genetic aortic disorders working on an international patient-registry research program