L’ASSOCIATION CANADIENNE DES MALADIES GENETIQUES DE L’AORTE
Dénomination enregistrée : GENETIC AORTIC DISORDERS ASSOCIATION CANADA/L'ASSOCIATION CANADIENNE DES MALADIES GENETIQUES DE L'AORTE
Numéro d'entreprise : 118833870RR0001
Cet organisme est désigné par l'Agence du revenu du Canada (ARC) comme organisme de bienfaisance enregistré. Ils se conforment aux exigences de l'ARC et ont reçu un numéro d'enregistrement d'organisme de bienfaisance.
Cet organisme de bienfaisance est entièrement configuré sur CanaDon, ce qui permet un traitement des dons plus rapide et l'accès à davantage de fonctionnalités.
Dédié à sauver et à améliorer la qualité de vie des patients et des familles touchées par des troubles de l'aorte génétiques
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.
Patients 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 endeavors GADA is focusing on:
1. Promoting the creation of multidisciplinary aortic clinics, for the treatment of all genetic aortic disorders across Canada.
2. Expediting the development of diagnostic criteria and treatment protocols for every genetic aortic disorder based on the international patient-registry research program of the Montalcino Aortic Consortium(MAC). MAC is comprised of researchers and physicians who are specialists in genetic aortic disorders.
ADRESSE DE L'ORGANISME ENREGISTRÉ
Centre Plaza Post
128 Queen St. S., PO Box 42257
Mississauga, ON, L5M 4Z0
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