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There are more than 180,000 Canadian children and adults with congenital heart defects (CHD) who need your help.

The Canadian Congenital Heart Alliance (CCHA) is an organization made up of patients with a congenital heart defect, their friends, families, and the medical community. With your support, we aim to improve the quality of care for these patients, many of whom require lifelong expert care.

CCHA was founded in 2004 to help support help to support adult congenital heart patients at Toronto General Hospital's Congenital Cardiac Centre for Adults (TCCCA). Since then, we have been working to support all Canadian with CHD.

One of immediate goals is to raise the profile of adult congenital heart disease in Canada, due to the current lack of funding and support. We want to ensure adult CHD patients receive the same excellent standard of care as children and at the same level as non-congenital cardiac patients.

CCHA has the strong support of CACH as well as congenital heart healthcare professionals across Canada.

Meet the CCHA Executive

The current executive consists of seven adult CHD patients, under the strong leadership of our President John MacEachern, the first Canadian to survive life-saving heart surgery in the 1940s.

Shelagh Ross, Paula Andrade, Avi Goldstein, Patrick Mathieu, BC Chapter rep Suzanne Scott and Quebec rep Nathalie Comtois, round out the executive, each contributing important skills and experience, not to mention time and commitment, to the organization.

Some facts about congenital heart defects in Canada
  • CHD is the most common birth defect, affecting 1 in 70 Canadian newborns
  • Historically, the focus of CHD care was confined to newborns and children whose life expectancy was limited to weeks, months, and in a few cases, several years
  • The amazing progress over the past 50 years in diagnosis, surgery and other interventions, have vastly improved survival
  • Presently, an estimated 130,000 adults living with CHD in Canada with no program of care equivalent to that provided for children with CHD or people with "lifestyle acquired" heart disease
  • We have a wide variety of heart defects, each type requiring different levels of intervention and monitoring
  • Adult patients have far fewer resources than children, and they must wait as much as 33 times longer for surgical intervention than patients with acquired heart disease
  • At least half of adult patients face the prospect of complications, re-operation, and premature/sudden death
  • The numbers are growing - now more than 50% of CHD patients are adults
Advisory Board Members

Chair: Erwin Oechslin MD, FESC - Director, Toronto Adult Congenital Clinic (TACCC)

Members:
Jeanine Harrison ACNP, Nurse Practitioner TACCC
Candice Silversides MD, MS, FRCP (C), FACC - Cardiologist at TACCC specializing in Women’s issues with CHD; Vice President, CACH Network
Arianne Marelli FRCP (C) FACC - Associate Professor of medicine at McGill University; Director, MAUDE Unit (McGill Unit for Congenital Heart Disease)
Judith Therrien MD, FRCP (C) - Cardiologist at Montreal’s Jewish General Hospital, McGill University; President of CACH Network
Andrew Redington MB, BS, MRCP (UK), MD, FRCP (UK), FRCP (C) - Director of Cardiology for the Hospital for Sick Children, Toronto

Liaison Advisory Board Member:
Gary Webb MD - Professor of Medicine at the University of Pennsylvania, Director of the Philadelphia Congenital Heart Clinic, and Chair of the Medical Advisory Board to the American Adult Congenital Heart Association.

What we’ve accomplished so far...
  • Guaranteed life insurance without a medical for patients 40 years of age and older, low cost travel insurance which covers pre-existing conditions for patients of any age, and dental plan coverage through Manulife Insurance.
  • A seat on the Provincial Panel studying Adult Congenital Heart Disease in Ontario, and the Federal Heart Health Strategy Committee
  • The development of the Cardiac Key for patients with CHD. The project is in a one-year pilot project with the TCCCA.
  • Partnership with Adult Patient Conference Toronto Congenital Cardiac Centre for Adults in hosting the annual Patient Conference held in Toronto each year in May.
  • The development of the CCHA Advisory Board
  • Collaboration with international adult CHD groups
  • Fund a Fellow Film night and other fundraising initiatives
How You Can Help
Donate by sending a cheque made out to "CACH", with "CCHA" in the memo line.
Cheques can be sent to:
CCHA
C4-233 Cross Avenue, Suite 233
Oakville, ON L6J 2W9

For more information, please visit www.cchaforlife.org 		 
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