Canadian Congenital Heart Alliance

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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...

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...

 

From 2016 to 2018 the Canadian Congenital Heart Alliance (CCHA) partnered with CHEO's HALO Research Institute, and recreational facilities in your local community to deliver Fearless Physical Activity events for children, teens, and adults living with congenital heart disease (CHD) across Ontario through funding from the Province of Ontario. Each season, Fearless Physical Activity events were held in London, Ottawa, Thunder Bay or Sudbury and Toronto for all ages and all levels of ability and experience! These events were very successful in creating new connections amongst families living with...

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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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