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:
Educating and supporting aortic clinics and those with genetic aortic disorders (GADs),
Advocating genetic testing for those with GADs to save lives and,
Enrolling Canadians with GADs into the MAC patient registry. Montalcino Aortic Consortium (MAC) is an international research collaborative of multidisciplinary clinicians collecting patient data to generate gene- and variant-specific risk models for personalized medicine to improve outcomes of individuals with genetic aortic disease.