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Canadian Congenital Heart Alliance

#CHDAdvocacy

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...

Join the movement - CHD Awareness
 
Be part of a growing movement to increase #CHD Awareness. Join CCHA in the fight!
 
Advocate   CCHA on Facebook  CCHA on Twitter  CCHA on Instagram   @cchaforlife
 
Volunteer   Volunteer with CCHA
 
Donate       Donate to CCHA
 
 
Congenital Heart Disease journal ceases publication

 

IMPORTANT INFORMATION FROM DR.DOUG MOODIE (EDITOR-IN-CHIEF) ABOUT THE DISCONTINUATION OF THE JOURNAL “CONGENITAL HEART DISEASE”

Congenital Heart Disease journal ceases publication

Send your feedback and let Wiley Blackwell publications know that this Journal is vital to the CHD professional community. 

On Social Media: @WileyNews

CHIP is funded by the community. Your donations and sponsorships help your community stay informed and connected.
 

 

Transitioning from pediatric to adult CHD care

We are excited to announce the launch of our revised and expanded Transition information section on our website, which includes an outline of transition timeline recommendations and a tools and resources section to support and educate youth and families during the transition process. Check it out!

General information about Transition and Risks: https://www.cchaforlife.org/transition 

Transition timeline recommendations: https://www.cchaforlife.org/transition-timeline-recommendations

Tools and Resources: https://www.cchaforlife.org/transition-tools-resources

 
In other news, CCHA collaborated...
CCHA: A Case to Support the Heart

Help CCHA deliver hope this season

Donate Now Through CanadaHelps.org!PayPal donation

The Canadian Congenital Heart Alliance (CCHA) is the only national organization that supports and advocates for the over 257,000 children and adults in Canadian living with Congenital Heart Disease (CHD).

CHD is  the most common birth defect, affecting 1 in 100 babies born worldwide.  CHD is a general term for a range of birth defects that affect the normal way the heart works, and are present at birth. It requires lifelong, specialized care including many auxiliary needs and challenges such as; insurance, mental health, disability, financial planning...

COVID19 and CHD resources

 

Please feel free to share during this time of social distancing and shelter-in-place

ACTIVITIES

Be sure to check your local library’s website, they usually have free resources and programs!

Bored at home? Here's a massive list of museums, zoos and theme parks offering virtual tours: https://www.goodhousekeeping.com/life/travel/a31784720/best-virtual-tour...

10 of the world’s best virtual museum and art gallery tours: https://www.theguardian.com/travel/2020/mar/23/10-of-the-worlds-best-virtual-museum-and-art- gallery-tours

“How to cope with social distancing during COVID-19” by KidsHelpPhone...

Stay home save lives COVID19

Image_by Grégory ROOSE from Pixabay(4983843_1280)

The World Health Organization officially declared COVID-19 a global pandemic on March 11, 2020 with Canada and provinces putting lockdowns in place shortly thereafter.  For 7 weeks now Canadians having been living through this COVID-19 pandemic.  We are all living with heightened emotions, living life day to day, not knowing what tomorrow or next week is going to look like, unable to make plans for the future.  We are all dealing with emotions such as fear and anxiety due to uncertainty and stress about jobs, school, financial wellbeing, health...

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
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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