www.rarediseaseday.org 

What can you do? Become a friend of Rare Disease Day Share your story Host an awareness or fundraising activity Post the Rare Disease Day logo on your Facebook,             website, or blog Send a press release to local media For more ideas and resources click here!

NOW AVAILABLE: ACC/AHA Pocket Guidelines for the Diagnosis & Management of Patients with Thoracic Aortic Disease

Canadian healthcare providers can now receive thier free copy. Click here

The CMA is proud to announce it is now a member of the Thoracic Aortic Disease Coalition (TADco, www.tadcoalition.org).  

The Many Faces of Connective Tissue Disorders

Click for English Christmas Letter Click for French Christmas Letter CLICK HERE TO MAKE A DONATION

Dear Friends and Members,

The Canadian Marfan Association is proud to be in its 25^th year of service to the Marfan and related disorder community. We are encouraged and humbled by the support we have received over the years and hope that we can continue to count on you to help us in achieving our mission. It is through the support of our members and friends that we are able to reach out to patients, their families, and medical professionals across the Nation.

This year’s Christmas letter shares important messages to our youth and teen groups and the importance of early diagnosis and family planning. Please remember to share these messages with your friends and family. THANK YOU FOR YOUR GENEROUS SUPPORT.

Sincerely,

Your friends at the Canadian Marfan Association

Wishing you and your family a warm and joyous holiday 

"It doesn’t matter if you can walk or run, it matters what you choose to do with what you have." - Ian Coomes, Marfan Syndrome

"It is important to be proud of who you are, regardless of what others choose to say." - Ian Coomes, Marfan Syndrome

"We found out later, that all of it could have been avoided." "Prevention is key." - Lisa Iliadis, ACTA2 

Dear Members and Friends,

National Marfan Awareness Week is fast approaching and takes place from November 13 -19, 2011. We’re very excited about our theme for this year, “Share Your Story”. We’d love to know about you, your family and friends and your experience with Marfan Syndrome or any of the Related Connective Tissue or Cardiovascular Disorders. How has having Marfan Syndrome or a related disorder impacted your life? Is there a special event that you’d like to share with others on our website. You can send us your stories (pictures are always appreciated) by email at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it If you would like to send us a short video please contact the CMA office. We’d especially love to hear from our younger members.  So have fun, be creative and tell us about you!

As always please also consider holding an awareness event or fundraiser. There are many great ways you can spread awareness and educate those around you. Here are just a few ideas. http://www.marfan.ca/content/view/77/46/  The Canadian Marfan Association can provide you with posters, brochures and balloons for your event.  And please don’t forget to send us photos of your event so we can include them in our newsletter and website.

If you plan to organize an event for National Marfan Awareness Week or would like more information about sharing your story please contact us toll free at 1-866-722-1722, 905-826-3223 locally or email us at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it  

Thanks and have fun spreading awareness!