Canadian Marfan Association
|Record #: MHL0108||Last Modified: 02 May 2014||Last Full Update: 02 May 2014|
|Social Media|| Facebook: www.facebook.com/CanadianMarfanAssociation
|Description & Services|
|Description||Assists patients and their families with genetic aortic disorders including Marfan Syndrome and related disorders through national programs of education, support, and research. Member of the Thoracic Aortic Disease Coalition, International Federation of Marfan Syndrome Organizations, and Canadian Organization for Rare Disorders. Marfan syndrome is a genetic disorder of the connective tissue that can affect the skeletal system, eyes, lungs, blood vessels and heart.
1 in 3000 Canadians are affected by Marfan syndrome and even more by genetic aortic disorders. Early recognition of the condition and early diagnosis is essential in order to prevent early death from aortic aneurysm and subsequently dissection allowing individuals to take preventative health care measures.
Volunteer opportunities are available.
|Hours||National Office Mon-Fri 8:30 am-4:00 pm|
|Application||To become a member, please make a donation in any amount at www.marfan.ca/donation.
To volunteer, please contact the National Office. Volunteers are asked to fill out an application, and go through a screening process to determine the best fit for them within the organization.
|Fees||Membership - $25/individual; $35/family; $100/corp/500 lifetime ; Donation - Individual and Corporate ; Membership - all donors become members of the Association for one year; any donation amount entitles you to a membership|
|Languages||English ; French|
|Meetings||Biennial CMA conference held across Canada: Diagnosis, treatment, and Management of Marfan syndrome and Genetic Aortic Disorders. Next meeting: Summer 2015, Ottawa|
|Intersection||Kitimat and Argentia Rd|
|Mailing Address||c/o Canadian Marfan Association
128 Queen St S
Mississauga, ON L5M 4Z0
|Toll Free Phone||1-866-722-1722|
|Primary Contact||Sharmin Gandhi, Executive Director; Email: firstname.lastname@example.org|
|Primary Executive||Sharmin Gandhi, Executive Director, Canadian Marfan Association|
|Print Material||Information booklets; videos for youth and medical professionals; booklets for children; pamphlets.|
|Elections||Annual General Meeting: usually at the conference (held in different locations across Canada to allow members across Canada to attend)|
|Funding||Grants ; Fundraising ; Donations ; Membership fees|
|Service Level||(50) Non Profit ; (51) Registered Charity|
|Subjects||Advocacy ; Health education ; Information and referral ; Medical research ; Musculoskeletal diseases ; Volunteer opportunities|