Canadian Congenital Heart Alliance

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Applications for Board of Directors positions now open

 

The Canadian Congenital Heart Alliance (CCHA) is looking for its next generation of leaders to fill critical volunteer positions on our national Board of Directors. This elected group supports the work of CCHA and provides mission-based leadership and strategic governance.  We believe that a highly effective Board includes members from across Canada from many walks of life and that this diversity helps to best guide the overall strategic management and stewardship of the Foundation.  The CCHA’s Nominating Committee needs your help to identify Board candidates. We are looking for committed people...

Illustration of Penelope

The Canadian Congenital Heart Alliance is excited to launch a children's book "Penelope goes for her heart checkup".

This illustrated book for children ages 5-8 , follows Penelope - a young girl - as she travels to the hospital for her ‘heart checkup’.  Reading this story with your child a few days before their ‘heart checkup’ will assist in preparing them for their appointment.

It also includes a colouring activity to engage children as they interact with Penelope's journey. Along with your child, you can follow Penelope and she and her mother visit the ‘Heart Team’.

Check out our KIDS...

Advocacy information for parents and adults with CHD

 

For individuals and parents of a child living with a congenital heart condition, self-advocacy skills are necessary to communicate with all their health care providers, manage their day to day activities and make effective use of community resources.

What is Self-Advocacy? Self-advocacy is when a person is able to speak up in order to communicate their needs. In medical settings, self-advocacy strategies are helpful to make sure you and/or your family are understood, that your needs are being met, and that you have understood the information and advice you've been given by your healthcare...

Scrabble tiles with letters spelling Mental Health

Image by Wokandapix from Pixabay

Congenital heart disease affects over 257,000 Canadians. Many experience mental health issues living with their CHD.

CCHA conducted a Mental Health survey* in October of 2020. We received 66 responses from across Canada.

88% of adults living with #CHD have experienced mental health challenges at some point.

75% of those living with CHD have discussed mental health concerns with a healthcare professional. Only 41% have been referred for mental health services by those same providers or another healthcare provider?

46% of those living with CHD don’t feel like...

Giving Tuesday December 1

 

Giving Tuesday gives us the opportunity to raise CHD awareness. This year, we are reflecting back on some of our accomplishments, showing how your generous donations and support made all this possible.

File Download CCHA Giving Tuesday video _FINAL.mp4 (8.61 MB)

We hope we can continue to count on you to support our mission to advocate for and enrich the lives of people living with CHD through awareness, education, research and support.

How will you support CHD families and CHD awareness this Giving Tuesday!
 
Advocate   CCHA on Facebook  CCHA on Twitter  CCHA on Instagram    @cchaforlife
 
Volunteer   Volunteer with CCHA
 
Donate       Donate to CCHA
 
 

December 12, 2020  Postion paper from the ESC working group of Adult Congenital Heart Disease and the International Society for Adult Congenital Heart Disease.published in Eurpoean Heart Journal. https://doi.org/10.1093/eurheartj/ehaa960

The paper discusses the broad impact of COVID-19 on ACHD patients, focusing specifically on pathophysiology, risk stratification for work, self-isolation, hospitalization, impact on pregnancy, psychosocial health, and longer-term implications for the provision of ACHD care. 

Figure 1 illustrated the non-ACHD risk factors and as well as categorizes risk for ACHD...

Canadian Congenital Heart Alliance logo

Date:       Wednesday June 24, 2020

Time:       8-9:30pm EDT

Where:    Virtual - videoconference and phone   

 

2020 AGM Documents

2020 CCHA AGM presentation  PDF icon Download 2020 CCHA AGM Presentation.pdf (1.04 MB)

2019 CCHA AGM minutes  PDF icon Download CCHA 2019 AGM minutes_draft.pdf (209.48 KB)

2019 CCHA Financial Statements  PDF icon Download Canadian Congential Heart Alliance Dec 2019 - Financial Statements - Final.pdf (228.93 KB)

2020-2021 Board of Directors  PDF icon Download 2020 CCHA Board of Directors_AGM.pdf (308.36 KB)

 

Assemblée Générale Annuelle

Date:       mecredi 24 juin 2020

Heure:     20 h à 21 h 30 HAE

Où:         visioconférence et téléphone...

CHD Awareness Week in media

 

Jennifer Michaud - CCHA Board member shares her CHD story on the Marilyn Denis show.

https://www.marilyn.ca/Health/Articles/February2020/Filling-the-research-gap.

You can see her Heart and Stroke interview here

https://youtu.be/5CBy3zmjNAM

 

CTV2 London – Hearts of London/Middlesex chapter of CCHA with Chair Lisa Wright and Owen Gillet – Feb 11, 2020

Owen Gillet shares his CHD story of living with HLHS, diagnosed with a life-threatening congenital heart defect weeks before he was born, and he hopes his story of survival will help others.

The purpose of these transition recommendations is to support families understand the stages of Transition and support discussions with your CHD healthcare team.  Transition should be personalized for each individual, in accordance with their chronological age, developmental stage and abilities.  Active engagement in the transition process is vital for teens and young adults and families to prepare for a healthy life as an adult with CHD

Life Stages

Introduction to Health: Age 2-7 years old

Goal - Understanding their body

Transition preparation begins when your child is a toddler; coach them to...

Resources

Health Information Summary

It’s important that your teen carry a Health Summary record in some form at all times. It should include

  • name of cardiac condition and other medical conditions
  • previous cardiac surgeries/interventions and other surgeries
  • name of medications
  • allergies
  • need for endocarditis prophylaxis (Yes/No)
  • names and contact details of health providers (CHD and primary care)
  • other vital info (i.e. low HR, low O2 sat, no pulse in right arm)

What is normal for you and your CHD?

There are many options to achieve this.

Medical Alert bracelet - consider getting a Medic-Alert bracelet as they have 24 hour medical...

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Congenital Heart Surgeons' Society Data Center
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