Canadian Marfan Association

[  Suggest an Update |  Print Version (New Window) ]
Record #: MHL0108 Last Modified: 09 May 2013 Last Full Update: 09 May 2013
Record Details
Social MediaFacebook Facebook: www.facebook.com/CanadianMarfanAssociation
Twitter Twitter: twitter.com/CanadianMarfan
Website Website: www.marfan.ca/
SOCIAL_MEDIA_ICONFacebook Twitter Website
Description & Services
Alternate NameCMA
DescriptionAssists patients and their families with Marfan Syndrome and related connective tissue and cardiovascular 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 3000-5000 Canadians are affected by this disorder. Early recognition of the condition and early diagnosis is essential for Marfan patients and their families in order to prevent early death from aortic dissection or aneurysm and for them to take a pro-active stance in their health care. 
Volunteer opportunities are available.
HoursNational Office Mon-Fri 8:30 am-4:00 pm
Areas ServedCanada
ApplicationTo become a member or a volunter 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.
FeesMembership - $25/individual; $35/family; $100/corp/500 lifetime ; Donation - Individual and Corporate ; Any donation amount entitles you to a membership
LanguagesEnglish ; French ; Greek
MeetingsMarfan Syndrome and Related Connective Tissue and Cardiovascular Disorders Conference held in cities across Canada.
Contact Information
IntersectionKitimat & Argentia Rd
AccessibilityFully Accessible
Mailing Addressc/o Canadian Marfan Association 
Box 42257 
Centre Plaza Postal 
128 Queen St S 
Mississauga, ON L5M 4Z0
Office Phone905-826-3223
Fax905-826-2125
Toll Free Phone1-866-722-1722
E-Mailinfo@marfan.ca
Websitewww.marfan.ca
Primary ContactSharmin Jamal, Executive Director; Email: sharmin@marfan.ca
Alternate ContactEva Theofilopoulos; Email: eva@marfan.ca
Primary ExecutiveSharmin Jamal
Other Details
Print MaterialInformation booklets; newsletter; videos for youth and medical professionals; booklets for children; pamphlets.
Established1986
ElectionsAnnual General Meeting: usually at the conference (held in different locations across Canada to allow members across Canada to attend)
FundingGrants ; Donations ; Membership fees
Service Level(50) Non Profit
Subjects
SubjectsAdvocacy ; Health education ; Information and referral ; Medical research ; Musculoskeletal diseases ; Volunteer opportunities