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Canadian Congenital Heart Alliance

#CHDAdvocacy

MP Marilyn Gladu recognizes February 14th as CHD Awareness Day in Statement in House of Commons

 

Thank you to Marilyn Gladu, MP for supporting Congenital Heart Disease (CHD) awareness in Canada and Canadian Congenital Heart Alliance.

By reading your statement in the House of Commons today and recognizing February 14th as Congenital Heart Disease (CHD) Awareness Day in Canada, you help increase awareness and advocacy for the more than 250,000 Canadians living with Congenital Heart Disease, many who require lifelong specialized care.

Marilyn Gladu is the MP for Sarnia-Lambton and serves as the Shadow Minister for Health in the Official Opposition

Invested Influenza ACHD trial

Study testing high-dose influenza vaccine in high-risk ACHD patients.

A North American INVESTED study will test the hypothesis that high dose trivalent influenza vaccine will reduce cardiopulmonary events to a greater extent than standard dose quadrivalent influenza vaccine in high-risk cardiovascular patients with a recent history of myocardial infarction or heart failure.  An ACHD sub-study will investigate the effects on ACHD population.

Eligibility Criteria

INVESTED eligibility criteria

Already received the influenza vaccine this year, you are not eligible to participate this year.  However, you can still contact the...

Here is a sneak peek at the upcoming collaborative article on medical treatment and care of adults with Congenital Heart Disease in Canada.  Thrilled to be part of this great collaborative research team lead by Dr. Jennifer Lapum at Ryerson University; and included Dr. Suzanne Fredericks also at Ryerson University, Barbara Bailey and Dr. Terrence Yau at Peter Munk Cardiac Centre, Dr. Ariane Marelli at McGill University Health Centre and our own Jennifer Graham at Canadian Congenital Heart Alliance. 

http://bit.ly/2PDQ6Xs

Looking forward to the full article to be published in journal Congenital...

Those living with Congenital Heart Disease may be concerned developing Endocarditis or if they have been told they no longer require antibiotic prophylaxis.

Below is an excerpt from the Canadian Paediatric Society Position Statement explaining the reasons for the 2007 change to the Guidelines (reaffirmed Feb 28, 2018):

 

Prevention of infective endocarditis: Updated guidelines

Primary reasons for Revision of the AHA guidelines

The new guidelines were not based on the results of a single study but rather on the collective body of evidence published in numerous studies over the past two decades...

Major milestone in the genetic research for CHD.

 

Toronto (September 20, 2018) – In a remarkable new genetic discovery, researchers at the Peter Munk Cardiac Centre, University Health Network (UHN), Ted Rogers Centre for Heart Research and The Hospital for Sick Children (SickKids) have found strong evidence that rare DNA variations can lead to Tetralogy of Fallot (ToF).

Published in Genetics in Medicine, ...

To read the full article https://www.uhn.ca/corporate/News/PressReleases/Pages/pioneering_genome_...

Organ donations help save lives.
 
“Every week 5 Canadians die while waiting for a transplant. Yet, a single donor can save up to 8 lives through their organs, and save or heal more than 100 lives through tissue donation.”
 
Click the link below for more details on how you can help change organ registration system and help save lives.
 
To register for organ donation or for more information, visit https://www.canada.ca/en/public-health/services/healthy-living/blood-organ-tissue-donation.html#a2 and select your...

By Sarah Trainor, CBC

"Thrown into the strange, scary world of critically sick children, heart parents become fierce advocates for awareness." Thanks to Sarah Trainor of CBC for sharing her family's story of their son Ellis' journey with CHD. Ellis' story touches on so many issues that CHD patients and their families face, including the importance of maternal screening for heart defects, the challenges of relocating to seek life-saving medical treatment, and the incredible roles that parents play as caregivers and advocates for their children.

A great piece for generating awareness during...

Congratulations to Nova Scotia for being the first province to declare February 7 - 14th Congenital Heart Disease Awareness Week! Way to go!

Big thanks @Brave_HeartSS @yarrowgillis @BrigadonTweets @IWKHealthCentre and everyone involved to raise awareness for CHD and make this happen.

 

 

Thank you to Marilyn Gladu, MP (Sarnia_Lambton, ON Opposition Health Critic) for reading our statement in the House of Commons and recognizing February 14th as Congenital Heart Disease (CHD) Awareness Day in Canada.

 

https://www.facebook.com/MPMarilynGladu/videos/920094518165380/

Health records

Toronto Star reporter Kristin Rushowy shining the spotlight on issue of medical records retention, a growing problem for Canadians living with CHD who had surgery as a child.

https://www.thestar.com/news/queenspark/2017/07/28/medical-records-of-sick-kids-should-be-kept-for-life-group-urges.html

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Congenital Heart Surgeons' Society Data Center
The Congenital Heart Surgeons' Society Data Center takes pride in their research and it would not be possible without the annual participation of the patients and families enrolled in their studies. Please click on the banner to be part of their team and to join their community.

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