Canadian Congenital Heart Alliance

News

Read our latest news and announcements.

News
jennifer
May 2, 2023
0
heart, heart defect, heart disease, congenital heart disease, congenital heart defect, OHS, #ohs, CHD, #CHD, heart health, education, CHD advocacy, CHD education, CHD awareness, heart disease, cardiopathie congenitale

FR

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...

News
jennifer
March 23, 2023
0
Fontan, heart, heart defect, heart disease, congenital heart disease, congenital heart defect, OHS, #ohs, CHD, #CHD, heart health, education, CHD advocacy, CHD education, CHD awreness

Artwork above by: Kassondra Krahn @kassondrakrahn www.kassondrakrahn.com

FONTAN EDUCATION DAY 2023

The 2nd annual Fontan Education Day is coming in April.

Connect peer-to-peer with others who have undergone a Fontan surgery and their family members, ask questions, and learn!

To register https://www.eventbrite.com/e/fontan-education-day-2023-tickets-494433894087

Event Date: Sunday April 16, 2023
Event Time: 9am – 12pm (Pacific Time)
Event Location: Online via Zoom
Eligibility: All ages with Fontan surgery

Not able to attend on the day? Register thru Eventbrite link and select “Zoom...

News
jennifer
February 11, 2023
0
Illustration of Penelope

Le Canadian Congenital Heart Alliance est ravi d'annoncer que leur livre pour enfant "Penelope goes for her heart checkup" est maintenant disponible en français "Pénélope va chez le cardiologue."

Suivez Pénélope - une petite fille - alors qu'elle se rend à l'hôpital pour son "bilan cardiaque” dans ce livre magnifiquement illustré pour les enfants de 5 à 8 ans

Pour en savoir plus et télécharger le livre, visitez https://www.cchaforlife.org/penelope-goes-her-heart-checkup

ALERTE ACTIVITÉ ENFANTS !!!Pour faire partie du voyage de Pénélope, téléchargez la page de coloriage ci-dessous. Coloriez...

News
jennifer
February 2, 2023
0
Hands holding multicoloured heart puzzle Congenital Heart Disease Awareness Week February 7-14 Congénital semaine de sensibilisation aux maladies cardiaques Février 7-14 #CHD #CHDAwarenessWeek #HeartMonth #MoisDuCoeur #heart #heartdisease

As we get ready for CHD Awareness Week on February 7 we invite you share our campaign across Canada, sharing personal stories, CHD research, projects and more. We are thrilled for the return of our 5th annual #CanadaLitRed4CHD campaign showcasing monuments across Canada lit red for CHD Awareness as well as our #CHDproclamation from cities coast to coast. Be sure to use our #CCHAweraiseourhandforCHD hashtag to show your CHD support.

To show your support this CHD Awareness Week, download our Facebook and Twitter covers in English and French.

Facebook cover EN

CHD Awareness Week Social Media assets #CHD #HeartMonth #MoisDuCoeur #CHDAwarenessWeek Heart Month Mois Du Coeur #CHDAdvocacy CHD Advocacy CHD Awareness Week Social Media assets #CHD #HeartMonth #MoisDuCoeur #CHDAwarenessWeek Heart Month Mois Du Coeur #CH

Twitter cover EN...

News
jennifer
February 2, 2023
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CCHA is back on Instagram #CHD #HeartMonth #1in100 #MoisduCoeur #cardiopathiecongenitale #heartdisease #heartdefect #instagram #insta #thegram #CHDawareness

Canadian Congenital Heart Alliance is back on Instagram with our new account @CCHA4LIFE!

You may have noticed we haven`t updated our old IG in some time. We were locked out and sadly unable to recover the account. We are currently in the process of closing down our old page @cchaforlife and we hope you will follow us on this new one.

Please continue to support our CHD community by liking our posts, following our page, and turning on your notifications as you look forward to amazing content this Heart Month 2023!

You can also follow us on:

Facebook: @CCHAforlife

Twitter: @cchaforlife...

News
jennifer
February 2, 2023
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It's Heart Month image with hands raised for Congenital Heart Disease Awareness #CHD #HeartMonth #1in100 #MoisduCoeur #cardiopathiecongenitale #heartdisease #heartdefect

February is Heart Month! CCHA is so excited to bring you a month full of events, announcements, and most importantly awareness. Raise your hand if you will join us in raising CHD Awareness in support of over 250,000 Canadians living with Congenital Heart Disease.

****************

C'est l'image du mois du cœur avec les mains levées pour la sensibilisation aux maladies cardiaques congénitales #CHD #HeartMonth #1in100 #MoisduCoeur #cardiopathiecongenitale #heartdisease #cardiopathie #heartdefect malformation cardiaque

Février est le mois du cœur ! Le CCHA est ravi de vous offrir un mois rempli d'événements, d'annonces et, surtout, de sensibilisation. Levez la main si vous vous joignez à nous pour sensibiliser la population aux cardiopathies congénitales afin de soutenir plus de 250,000 Canadiens vivant avec une cardiopathie...

News
jennifer
November 25, 2022
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Heart, CHD, heart disease, heart defect, congenital, congenital heart defect, birth defect, hole in heart, baby, congenital heart disease, giving tuesday, giving tuesday CA, donate, charity, volunteer, support, give back

FR

November 29, 2022 is Giving Tuesday!

Giving Tuesday is a global movement that started in 2013, dedicated to giving back and acts as the opening day of the giving season! It's a time where we encourage all of you to join together and rally for the Canadian Congenital Heart Alliance. 

Giving Tuesday harnesses the potential of social media and generosity of people around the world to bring about real change in their communities. It provides a platform for CCHA to encourage the donation of time, resources and talents to address the challenges the CHD community faces, with more than...

News
jennifer
October 6, 2022
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heart, heart disease, heart defect, survey, Canada, heart health, healthcare, health access, health equity, cardiac, congenital heart, congenital heart disease, congenital heart defect, feedback

Français

This survey is now closed.

Thank you for participating in this important survey on access to congenital heart disease care in Canada

https://www.surveymonkey.ca/r/QYQXGC3

A CHD national advisory committee (CHD-NAC) has been convened to collaboratively lead the development of a Canadian CHD strategy and implementation of a CHD action plan. Lead by Heart & Stroke, the CHD-NAC consists of a core group of strategic leaders representing, The Canadian Pediatric Cardiology Association, Canadian Adult Congenital Heart Network, Canadian Cardiovascular Society, Canadian Congenital Heart...

News
jennifer
June 3, 2022
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Multiple images of people playing sports and exercising on top of Exercise and CHD title and event details

Exciting event! Virtual Exercise and CHD event for children and families hosted by Virtual Heart Connection through their 'Connecting Caregivers' program.

Register here https://forms.gle/1px4EwXfiayAHVjK9

CCHA's Brenaven Kugamoorthy, a kinesiologist from UofT who has an interest in physical activity for individuals with congenital heart diseases, to give a 30 minute talk on recommendations for exercise programs, different modalities of exercise children and caregivers/parents can do together to meet their demands and capacities. This talk will be mostly targeted towards caregivers/parents...

News
jennifer
May 6, 2022
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heart, heart disease, heart defect, heart health, healthy living, congenital heart, congenital heart defect, CHD, board, board of directors, volunteer

 

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...

News
jennifer
February 4, 2022
0
heart defects, heart disease, charity, CHD, heart month, heart, congenital heart defect, congenital heart disease, birth defect, 1 in 100, chd awareness, chd advocacy

 

CCHA is partnering with 3D Heart Project.

Congratulations to Dr. Carolina Escudero and her 3D Heart project team for winning the $10,000 viewers choice prize from WCCHNs 2022 BoostUP competition!

CCHA is excited to annouce we have partnered with the 3D Heart Project, an innovative cardiac project whose vision is to improve understanding for children, adults and their families of their heart defect and diagnosis by creating an open and freely accessible educational resource using 3D models. Education and access to CHD resources for individuals and families and trainees is vital to being engaged...

News
jennifer
February 1, 2022
0
heart defects, heart disease, charity, CHD, heart month, heart, congenital heart defect, congenital heart disease, birth defect, 1 in 100, chd awareness, chd advocacy

 

Happy Heart Month 2022 from the Canadian Congenital Heart Alliance (CCHA)!

This year our Heart Month campaign focuses on the number four - 4 chambers in the heart; 4 weeks in February; 4 values in our mission. We advocate for and enrich the lives of people with congenital heart disease (CHD) through awareness, education, research and support. And this month, we've got a line-up of engaging events and campaigns 4 you!

This month we will make announcements, introduce #hastag challenges, launch new resources, and host family activities and more. Stay tuned to see how we have #CanadaLitRed4CHD to...

News
jennifer
February 1, 2022
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fundraiser, heart defects, heart disease, charity, CHD, heart month, heart, website redesign, technology, invest

 

CCHA’s website is getting a redesign!

Our website is looking a little tired and outdated, which is not surprising since it was last updated in 2014. Therefore this Heart Month we are launching a fundraiser to raise $4,000 to help us upgrade our website and invest in technology for educational seminars and events. Any amount you are able to contribute would be greatly appreciated.

Donate Now Through CanadaHelps.org!

Last fall we partnered with Kathy, Eric and Cassidy - a student group from York University’s UX/UI Design Capstone course - to conduct a review and needs analysis of our current website, and develop a new design...

News
jennifer
January 10, 2022
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Heart Defect, heart disease, virtual camp, Fontan, congenital heart disease, CHD

 

CCHA is pleased to partner with Virtual Heart Connection for their 2nd annual Virtual Fontan Heart Camp. 

To register https://forms.gle/W8rgkjNAzpAX5wVW6

Event Date: Saturday, February 26, 2022
Event Time: 9am – 3pm (Mountain Time)
Event Agenda: View Agenda Here
Event Location: Online
Eligibility: Children between the ages of 8-15 who had Fontan surgery and are followed by a cardiologist anywhere in Canada!
RSVP EXTENDED! Register by January 22, 2022 – Space is Limited!

Event Description

Join us on Saturday, February 26, 2022 from 9am – 3pm (Mountain Time)
for the second Western Canadian...

News
jennifer
December 29, 2021
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2021 support for families living with heart defects and congenital heart disease

 

CCHA is excited to look back at some of our accomplishments this year. These accomplishments wouldn't be possible without generous donations and support from our CHD community, we thank you from the bottom of our hearts.

See how your support helps us achieve our mission to advocate for and enrich the lives of people living with CHD through awareness, education, research and support for families living with heart defects.

Your support will help us continue to move forward with our mission – DONATE HERE

Advocacy

2021 House of Commons statement by Karen Vecchio (MP Elgin-London-Middlesex Deputy...

News
jennifer
November 19, 2021
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fundraiser, heart defects, heart disease, charity, CHD, small business, holiday shopping, buy Canadian, virtual market

 

Welcome to the 2021 virtual Holiay Market in support of CCHA acheiving our mission to advocate for and enrich the lives of people living with Congenital Heart Disease (CHD) through awareness, education, research and support.

This year we have 7 vendors participating, be sure to check often for deals and special offers!

Join the FB market https://www.facebook.com/groups/415193386162756 or use the links below to shop.

Thank you for your support of small business and CCHA.

fundraiser, heart defects, heart disease, charity, CHD, small business, holiday shopping, buy Canadian, virtual market, buy local  Pampered Chef - Robbyn McLellan - bit.ly/PamperedChefCCHA

 

fundraiser, heart defects, heart disease, charity, CHD, small business, holiday shopping, buy Canadian, virtual market, buy local  Scentsy - Tamara Sasseville - bit.ly/ScentsyPartyCCHA

fundraiser, heart defects, heart disease, charity, CHD, small business, holiday shopping, buy Canadian, virtual market, buy local  Thirty-one...

News
jennifer
February 23, 2021
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Karen Vecchio MP reading statement for CHD Awareness Week in House of Commons virtually

 

#CHDAwarenessWeek may be over but we continue to work year-round to improve #CHD resources, support, and research.

Special appreciation goes to Karen Vecchio, Member of Parliament (Elgin-London-Middlesex) for her statement in the House of Commons recognizing Congenital Heart Disease Awareness Week (Feb 7-14) and supporting Canadian families living with Congenital Heart Disease.

Karen Vecchio, MP is Deputy House Leader of the Official Opposition.

https://fb.watch/3Qga8qeI42/

News
jennifer
February 6, 2021
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Canadian flag

    City of Edmonton Proclaiming CHD Awareness Week  City of Calgary Proclaiming CHD Awareness Week  City of Chestermere Proclaiming CHD Awareness Week

Excited to see Alberta is leading the charge this year, proclaiming CHD Awareness Week in Edmonton, Calgary and Chestermere.

Thanks to our board member Jennifer M for submitting the requests. If you want to help us have even more cities across Canada proclaim CHD Awareness Week 2022, email us at info@cchaforlife.org to get involved!

 

Les villes canadiennes proclament la Semaine de sensibilisation aux cardiopathies congénitales

Je suis ravi de voir que l'Alberta mène la charge cette année, proclamant...

News
jennifer
February 6, 2021
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CN Tower lit red

Iconic buildings all across Canada are lighting up red for CHD Awareness Week!

Feb 7 - High Level Bridge - Edmonton AB https://www.edmonton.ca/attractions_events/schedule_festivals_events/lig...

Feb 7 - BC Place - Vancouver BC  https://www.facebook.com/BCPlaceStadium/posts/5594016120624553

Feb 9 - Calgary Tower - Calgary AB  https://www.calgarytower.com/about/light-shows/lighting-schedules/

Feb 12-14 - London City Hall, JA Taylor building, Canada Life building and RBC Place Convention Centre - London ON

Feb 14 - CN Tower - Toronto ON https://www.cntower.ca/en-ca/home.html#earthcams

Feb...

News
jennifer
February 6, 2021
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Images for family doing Trivia Night, children doing Scavenger Hunt and Person playing guitar for virtual concert

CCHA is thrilled to announce three exciting virtual events to raise CHD Awareness during Heart Month.

Congenital heart defects affect 1 in 100 births and is the most common birth defect. Congenital Heart Disease is a lifelong illness requiring specialized cardiac care.

VIRTUAL CONCERT

When:     Sunday February 28 at 7:00 - 8:30pm EST

Where:    Online event

Who:       4 talented musicians including Jake Ohanian, Russ Matthews, Tyler Mullendore

What:     Virtual Live concert. (to see our first concert visit https://www.cchaforlife.org/news/music-hearts-1-100-journey-virtual-concert)

Why:      To promote Congenital...

News
jennifer
January 28, 2021
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Sad man with a beard and beanie looking out a window

Image by StockSnap from Pixabay

In October 2020 CCHA in partnership with MacEwan Nurs 424 students conducted a Mental Health survey for Canadians living with CHD. The survey results indicated that an astonishing 88% of adults living with CHD said they had experienced mental health challenges at some point.

As a result, CCHA has compiled a list of mental health resources across Canada, they can be accessed at https://www.cchaforlife.org/mental-health-resources

 

 

News
jennifer
January 27, 2021
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Canadian Fontan Website and Registry
 
Welcome to your one stop shop for all things Fontan related, whether you are a health care provider or patient.
Follow the link to find out everything you need to know about Fontan physiology, how far we have come and what we hope for the future. #CanadianFontan
 

The Canadian Fontan website and registry is for adults and parents of Fontan children as well as CHD medical professionals. The site includes patient stories, educational resources, registry and notification of research projects. Check it out!

https://canadianfontan.com/

To register for the 2023 Fontan Education Day on April 16,

News
jennifer
December 19, 2020
0
CCHA year in review

Although 2020 was a tough year for us all, we at CCHA are looking back fondly on some of the incredible work we were able to do to enrich the lives of our CHD community members. Thank you to all our donors, members and volunteers who made it all possible!

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

We are looking forward to all that is in store for 2021.

News
jennifer
December 1, 2020
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Board member Christelle

 

See why our Board Members support CCHA and its mission.

Christelle Roy-Couillard

I was born with a congenital heart defect called ALCAPA. Although I’ve lived with this my whole life, it was only discovered when I was 26 years old. The fact that I lived well into adulthood without a serious outcome was surprising and I feel blessed to have made it through. Since my diagnosis, I’ve been seeing the team at the Toronto General Hospital Peter Munk Cardiac Centre. I had open heart surgery to repair my anomalous coronary artery on November 24, 2014 and due to complications, required a second surgery...

News
jennifer
November 6, 2020
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Holiday Market encore

 

Have you started your Holiday shopping yet? It is about to be that wonderful time of the year!  But this year you can not only find that special item but you can support the Canadian Congenital Heart* Alliance too!   

We had great success with the 1st 'Virtual Holiday Market' for CCHA that we are holding part 2. Beginning November 30 until December 9, 2020 and will feature nine wonderful vendors. Each will showcase their products and share gift ideas, sales and more over the next week. The BEST (besides getting your holiday shopping done) is that a percentage of all sales during this week will be...

News
jennifer
November 6, 2020
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CHD Awareness concert - crowd at concert with hands in heart shape

 

CCHA was LIVE with a virtual concert to raise CHD AWARENESS

 

One of CCHA's goals as an organization is RAISE AWARENESS of CHD! As a way to achieve our goal, on November 22nd at 5:30pm EST/6:30pm AST, we teamed up with a group of students from Saint Francis Xavier University to host a FACEBOOK LIVE Concert – Music With Hearts; 1 in 100 Journey!!

 

This event featured some great East Coast talent such as Russ Matthews, Tyler Mullendore, Todd Googoo, and many more! We also have some wonderful talent from individuals who live with CHD such as Shannon Durnan and Joe Bladek!! Also Kyle Tayes and...

News
jennifer
October 29, 2020
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Bandaged fabric heart in hand image with CCHA logo

Has living with CHD impacted your mental Health? We want to hear from you!

Survey link here www.surveymonkey.com/r/9F2GZPK 

Canadian Congenital Heart Alliance in partnership with MacEwan University are asking how your experience living with CHD has impacted your mental health. Your answers will be anonymous and the data collected through this survey will be used to guide program and resource development, future research, and advocacy tools.
Survey closes November 16, 2020.
 

News
jennifer
June 28, 2020
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Beat Retreat returns to CCHA

Exciting announcement from CCHA and Beat Retreat

The Canadian Congenital Heart Alliance (CCHA) and The Beat Retreat Congenital Heart Camp are proud to announce that they have once again joined forces to support and deliver “The Beat Retreat” camp.

This fun-filled four day event for adults living with congenital heart disease (CHD) will return as a program under the Canadian Congenital Heart Alliance known as the “The Beat Retreat”.

With the Beat Retreat returning as a program of CCHA, it will ensure continued financial support for the camp, allowing for stable and long term growth.  “We are...

News
jennifer
June 12, 2020
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Walk of Life 2020

 

Join Team CCHA in the 2020 Virtual Walk of Life! https://bit.ly/WOL2020TeamCCHA

The Canadian Congenital Heart Alliance (CCHA) is happy to be part of this year's VIRTUAL WALK OF LIFE!  Even though we can’t celebrate in person this year, we are provided with a unique opportunity to come together from all across Canada to raise funds to support those living with CHD. By joining Team CCHA, you will be helping to fund important programs and events such as:

  • Awareness materials
  • Camps
  • Conferences
  • Education days 
  • Support initiatives such as Transition Programs, and more!

You will also be supporting...

News
jennifer
June 11, 2020
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Stay home save lives COVID19

 

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. There has been a lot of chaos, confusion and misinformation over the 9+ weeks.

As provinces begin to ease restrictions for the COVID-19 pandemic, it's important to be aware that children and adults living with congenital heart disease (CHD) may be at higher risk for more severe symptoms and
complications.

Canadian Congenital Heart Alliance has created a COVID-19 and CHD tips page.  For important informations, Q&A, resources...

News
jennifer
February 13, 2020
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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
 
 
News
jennifer
February 12, 2020
0
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.
 

 

News
jennifer
February 7, 2020
0
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...
News
jennifer
December 19, 2019
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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...

News
jennifer
May 21, 2021
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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...

News
jennifer
February 12, 2021
0
Illustration of Penelope

 

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

Follow Penelope - a young girl - as she travels to the hospital for her ‘heart checkup’ with her Heart Team in this beautifully illustrated book for children ages 5-8. 

To learn more and download the book visit https://www.cchaforlife.org/penelope-goes-her-heart-checkup

KIDS ACTIVITY ALERT!!!  To be a part of Penelope's journey, download the colouring page below. Colour Penelope and her Heart Team and take a pic of the completed colouring page, tag us...

News
jennifer
November 30, 2020
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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
 
 
News
jennifer
February 12, 2020
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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.

News
jennifer
January 24, 2020
0
Take our survey

We want to hear from you!

We are looking for feedback from teens, young adults and adults and their families about their experiences - past or current in transitioning from pediatric to adult CHD care. 

Below is a link to a brief survey (5 min) to tell us about your experiences.  We wil use your feedback to create educational materials and resources.  We look forward to hearing from you!

Create your own user feedback survey

https://www.surveymonkey.com/r/5QQHRHY

 

 

News
jennifer
November 29, 2019
0
75th Anniversary of 'blue baby' surgery

Today we celebrate 75 years since the first "blue baby" surgery by Alfred Blalock, with Helen Taussig and Vivien Thomas on November 29, 1944.

Picture of Dr. Alfred Blalock, Helen Taussig and Vivien Thomas

The child was 15-month-old, Eileen Saxon, the surgery was a success and she went home after 3 months.  Unfortunately her cynotic episodes returned and 2 days before her 2nd birthday, she underwent another operation, she passed away 5 days later.

Now known as the BT or BTT shunt, the surgery was a success and really the start of #CHD surgery.  We have come a long way since then, with an almost 95% survival rate into adulthood now. 

Between 1947 and...

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jennifer
February 6, 2019
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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

News
jennifer
January 28, 2019
0

2019 Faces of CHD campaign

During Heart Month 2019, we highlighted CHD stories of our members from across Canada. Thank to everyone for their stories of strength, perseverance and hope and for sharing their experience with the community of CCHA and anyone who has been touched by Congenital Heart Disease.

 

Meaghan S' story  Meaghan S' Faces of CHD story  PDF icon Download Meaghan S_Faces of CHD story.pdf (76.53 KB)

 

Rita F's story  Rita's Faces of CHD story  PDF icon Download Rita F_Faces of CHD story.pdf (72.09 KB)

 

Michelle K's story Faces of CHD Michelle's story   PDF icon Download Michelle K_Faces of CHD story.pdf (1.02 MB)

Amanda C's story CCHA Faces of CHD in Canada - Amanda  PDF icon Download Amanda C_Faces of CHD story.pdf (837.88 KB)

Shelley C's...

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jennifer
November 30, 2018
0
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...

News
jennifer
November 20, 2018
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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...

News
jennifer
November 20, 2018
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CCHA Named Feature Charity of the Month

We are honoured to be named feature charity of the month by First Edition First Aid Training!

Thank you for recognizing our organization and the hard work we do to support children and adults in Canada living with congenital heart disease #CHD through education, research and advocacy.  Your recognition helps to shine a spotlight on Congenital Heart Disease and increase CHD awareness.

To read the full article visit:  http://bit.ly/2Km34Dm

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jennifer
September 20, 2018
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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_...

News
jennifer
August 17, 2018
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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...
News
jennifer
June 22, 2018
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Have you heard of the Great Canadian Giving Challenge? It is a national public contest to benefit any registered Canadian charity. Every $1 donated to a registered charity in June, automatically enters the charity to win an additional $10,000 donation. The grand prize draw is on Canada Day and one lucky charity will receive the grand prize of $10,000. 

Donate Here

Did the Great Canadian Giving Challenge make a difference last year? In 2017, the third annual Great Canadian Giving Challenge, 77,785 Canadians participated, donating almost $10 million to over 10,000 charities, representing an...

News
jennifer
June 20, 2018
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AGM documents and attendance details are available on CCHA website.

Find info at https://www.cchaforlife.org/2018-agm

News
jennifer
May 9, 2018
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JOIN TEAM CCHA IN THE 2018 WALK OF LIFE®

Join or Donate to Team CCHA: https://secure.e2rm.com/registrant/TeamFundraisingPage.aspx?teamID=79750...

 

Saturday, May 26, 2018 8:00 am - 12:00 pm

Ontario Science Centre, 770 Don Mills Road & E.T. Seton Park (Sunnybrook Parkland)

FREE Parking, T-Shirt, snacks, beverages and BBQ, bouncy castles

Free registration for kids under 14

*** This year Team CCHA will have our own personalized T-shirts. Be sure to pick them up when you register!

 

Host: Roger Petersen

Mascots: PAW PATROL

Musical Entertainment: Andy B. and the Honey Tones

 

SCHEDULE OF EVENTS...

News
jennifer
May 9, 2018
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TRASE study: Young adults (15-30 yo) with #CHD or parents of young adults with CHD needed for transition readiness study!
Contact TRASE.Study@childrens.harvard.edu Open to

 

 

News
jennifer
May 8, 2018
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Tamarack Ottawa Race Weekend in support of CCHA

Saturday, May 26 at 2 PM - 7 PM
Downtown Ottawa


 

CCHA will have a team participating and fundraising. There is a 2km, 5km, 10km, half marathon and full marathon
option.

Join our team:  https://secure.e2rm.com/registrant/EventHome.aspx?eventid=226965&langpre...

Donate to our team:  https://secure.e2rm.com/registrant/FundraisingPage.aspx?registrationID=4012085&langPref=en-CA#&panel1-1

 

We will also have a booth at the Health and Fitness Expo which runs Thursday-Saturday.

Volunteer: contact Jennifer at...

News
jennifer
February 26, 2018
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The Agenda on TVOThe Agenda on TVO

*photo from TheAgenda/TVO website/Liane Kotler-Producer

 

TVO Interview: https://tvo.org/video/programs/the-agenda-with-steve-paikin/congenital-c...

Do you know what the # 1 birth defect is in Canada? Congenital heart disease (CHD).

On Tuesday, February 27 on ‘The Agenda’ - TV Ontario, there was a panel discussion focusing on congenital heart disease. Viewers heard more about the #1 birth defect - which affects about 1/100 births. Guests included

Dr. Erwin N. Oechslin, director at the Congenital Cardiac Centre for Adults located at the Peter Munk Cardiac Centre, University Health Network...

News
jennifer
February 15, 2018
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CCHA's Insurance Broker Nick Godfrey has a new blog discussing non-medical life insurance for those living with CHD. Check it out http://deniedlifeinsurance.ca/congenital-heart-defects-and-life-insurance-for-adults/

 

For more information about insurance with CHD or to contact Nick, visit our Insurance page

News
jennifer
February 14, 2018
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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...

News
jennifer
February 14, 2018
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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.

 

 

News
jennifer
February 14, 2018
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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/

News
jennifer
December 14, 2017
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#1in100

Hey Canada.

CCHA is challenging you to find your 1 in 100 Champion!

Share your video, picture or story of your 1 in 100 Champion on social media to help raise awareness for Congenital Heart Disease #CHD. Tag us in your post @cchaforlife on Facebook, Twitter or Instagram using the hashtags #1in100, #CHD, #CCHA.  Not on social media - no problem. You can still share your 1 in 100 Champion video, picture or story by emailing them to us at...

News
jennifer
November 15, 2017
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The presentation from the 2017 AGM is now posted.

Click the link below for details.

http://www.cchaforlife.org/2017-agm

News
jennifer
October 1, 2017
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Board of Directors - Positions available

Interested in supporting children and adults with CHD across Canada, apply for a position on our Board of Directors

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...

News
jennifer
July 29, 2017
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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

News
jennifer
May 17, 2017
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The Canadian Congenital Heart Alliance (CCHA) partnered with the 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) held across Ontario in 2017.

Interested in Fearless Physical Activity? Check out our resources here Fearless Physical Activity

 

Funding provided through a grant from the Ontario Ministry of Tourism, Culture and Sport

 

News
jennifer
May 12, 2017
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Province the first in Canada to offer screening to all healthy babies By Jennifer Chevalier, CBC News. Photo Jean Delisle/CBC

 

The announcement that Pulse Oximetry Newborn Screening is coming to Ontario is amazing news for early detection of babies born with Critical Congenital Heart Defects (CCHD).

This program will help catch upwards of 150 babies a year born with Congenital Heart Disease (CHD) but who currently leave the hospital undiagnosed. “Early detection and treatment of CHD is critical in ensuring the best possible long-term quality of life for individuals that will live with this life-long disease" stated Krista Vriend, President of the Canadian Congenital Heart Alliance (CCHA). "Leadership and progress on...

News
JordanH
April 19, 2017
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Very exciting, CCHA's Fearless Physical Activity program in partnership with CHEO is featured on CTV Ottawa!

Check out the video: http://ottawa.ctvnews.ca/video?binId=1.1166252 

News
JordanH
November 19, 2016
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Jennifer Graham - President

Jennifer Graham was born with a CHD - congenitally corrected transposition of the great arteries (ccTGA). Jennifer has been a part of CCHA since 2006.  She graduated from Carleton University with a B.Sc Hon in Biology and Psychology.  During her career she has held various positions including Project Manager, Computer System designer and developer, Process Re-engineering Analyst and National Trainer in the Insurance and Pharmaceutical industries.

While part of the CCHA team, she has helped organize events fundraising and social events as well as, represent CCHA at CCS...

News
JordanH
November 14, 2016
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Date: November 29, 2016 - 7:30-9:00 PM EST

Thank you to everyone who attended our 2016 Annual General Meeting.

Documents
 
2016 AGM presentation
2015 Audtied Financial Statments

PDF icon Download 2015 Audited Financial Statements.pdf (3.52 MB)

CCHA AGM Minutes 2015

PDF icon Download CCHA_AGM_Minutes_2015.pdf (94.47 KB)

Board Members 2016-2019

Download Board members 2016-2017.pdf (83.63 KB)

News
JordanH
November 6, 2016
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Survey Invitation for New CHD “Fearless Physical Activity” Events

 

CCHA wants to hear your ideas for our “Fearless Physical Activity” events!

 

CCHA needs your help to design physical activity events specifically geared towards children, youth and adults with CHD.

In order for CCHA to make these “Fearless” events as helpful and successful as possible, you are invited to complete a very brief survey asking for your opinion on the design of these events. What activities would interest you? When and for how long would you want to participate?

 

The survey will take only 5 minutes. Click on the link...

News
JordanH
September 10, 2016
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CCHA_Logo2registered

Board of Directors positions available!

View the attachment for more information

PDF icon Download Board of Directors Positions Available.pdf (444.23 KB)

 

News
jennifer
August 17, 2016
1
'Fearless' Physical Activity

The Canadian Congenital Heart Alliance (CCHA) is thrilled to announce they are the successful recipients of a grant from the Ontario Ministry of Tourism, Culture and Sport. This grant will fund a comprehensive, ground-breaking two-year study – ‘Fearless Physical Activity’ - to support the delivery of high-quality, meaningful physical activities for children, youth and adults with congenital heart disease (CHD) and their families.

Thanks to an Ontario Sport and Recreation Communities Fund grant of $186,934, this unique project, in collaboration with Dr. Pat Longmuir of the Healthy Active...

News
JordanH
August 1, 2016
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Check out the Target Practice Book website of Chris Dyson who is a goaltending instructor, author and friend of the CCHA. It makes a great stocking stuffer for the holidays!

News
JordanH
June 22, 2016
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Be a great Canadian and help support the CCHA, by participating in The Great Canadian Giving Challenge

Follow the link to donate 

https://www.canadahelps.org/gcgc/97015

News
JordanH
June 2, 2016
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Dear Patients and Families,
 
Thank you for spending the day with us for our inaugural ‘Unique Hearts, Unique Lives’ patient education day on May 7. We very much enjoyed meeting many of you and we hope that this is just the first of many future events to come.
 
Many of you requested the presentations from the event and we are happy to announce that the power point presentations can now be found on the Providence Slideshare site at:
 
 
And all of all the tweets + photos from the day can be found at:
 
News
JordanH
May 14, 2016
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CCHA president, Eric Gonneau, and long time member Lori Constable-Smolcic jointly gave a lecture to University of Toronto Nursing Students on April 13th, 2016.  The presentation, titled “When Cute Kids Grow Up” explained in detail from a patients perspective life with Congenital Heart Defect, especially as an adult.  Students were also introduced to CCHA and explored the implications on the health care system of adding more CHD Adult patients every year.  Numerous questions filled all the available time.  

News
shelagh
February 8, 2016
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The 2016 Beat Retreat camp information is now available! To find out more about the camp and to print the application and medical forms please click HERE.

News
shelagh
January 2, 2016
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Adults with congenital heart disease (ACHD) may be at increased risk for post-traumatic stress disorder (PTSD), new research suggests...

To read the article please click HERE. 

News
shelagh
December 3, 2015
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Congratulations to Dr. Gary Webb for being awarded a Lifetime Achievement Award from the International Society for Congenital Heart Disease!

Beginning in 1980, Dr. Webb was codirector, and then director of the Toronto Congenital Cardiac Center for Adults, the first such ACHD clinic in the world. He was the founding president of the Canadian Adult Congenital Heart Network, and he was the founding president of the International Society for Adult Congenital Heart Disease.

To read the announcement please click HERE.

 

News
shelagh
November 25, 2015
1

Adults with congenital heart defects at considerably higher risk of stroke 

Wednesday, 25 Nov 2015 12:31 

A study published in Circulation has shown adults with congenital heart defects to have much higher rates of stroke, compared to the general population.

The researchers from McGill University, Montreal, Quebec, Canada analysed stroke data on 19,638 congenital heart disease patients between the ages of 18 and 64, and compared them with that of the general population of Quebec, Canada. Their aim was to find the frequency, risk and strongest predictors of stroke.

Their results include:

  • Stroke...
News
shelagh
November 12, 2015
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7th annual Beat Retreat brings adult CHD patients and professionals together

What has 36 hearts, 72 legs, and more enthusiasm than you can shake a stick at? Give up? The Canadian Congenital Heart Alliance’s 7th annual Beat Retreat, held September 17-20, 2015.

The Beat Retreat is a fun-filled, four-day annual event for adults with congenital heart disease (ACHD).  This year’s retreat – the biggest to date – drew together 27 adult congenital heart disease (CHD) patients, two caregivers, and seven health care professionals from Southern Ontario, Quebec and even Alberta.

While at camp, attendees...

News
shelagh
October 3, 2015
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Would you like to create a wallet-size health passport in case of emergency? You can now use the SickKids MyHealth Passport to create a CHD-specific form with all of your pertinent health and contact information. Just click HERE and use the drop-dow menu to select "Congenital heart disease" and then fill out the information and keep it in your wallet or purse.

News
shelagh
April 21, 2015
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Middle-aged congenital heart disease survivors may need special care 

American Heart Association Scientific Statement 

 

Statement Highlight

  • For the first time, the American Heart Association has made recommendations for treating people older than 40 with congenital heart disease.

Embargoed until 3 p.m. CT/4 p.m. ET Monday, April 20, 2015 

DALLAS, April 20, 2015 — For the first time, the American Heart Association has issued recommendations for healthcare providers treating people older than 40 with congenital heart disease.

“People born with congenital heart disease are living longer and fuller...

News
shelagh
April 6, 2015
0

A Prescription for Change – Making Affordable Medicine a Priority

by Alison Lawton

When we launched the Access Our Medicine Initiative on World Health Day last year I didn’t know if anyone would respond.

We knew that the price of medicine was rising for life-changing medicines with devastating consequences for everyone, around the globe. We learned of people choosing between food and medicine, being pushed into poverty and even dying because they couldn’t afford medicine they needed.

But I also knew that for many people the issue of access to affordable medicine just isn’t top of mind until...

News
Pixel Sweatshop
August 23, 2013
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The British Heart Foundation has released figures that reveal a huge 83% drop in the number of children dying from congenital heart disease. News story from Australia’s The Reporter:

FIXING a child’s heart is one the most intricate operations that the NHS performs.

Surgeons who do it must operate on tiny babies whose hearts are hardly bigger than walnuts and whose veins are little more than a hair’s breadth across.

But despite the intricacy, it is something that surgeons, and in particular NHS surgeons, have quietly been getting better at for decades.

Today the British Heart Foundation has...

News
Pixel Sweatshop
March 7, 2013
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March 7, 2013

Boston, MA - The annual number of hospitalizations for congenital heart disease among US adults increased more rapidly than hospitalizations among children over a recent 12-year period, new research shows [1]. Between 1998 and 2010, the frequency of hospitalizations among adults admitted for congenital defects has grown twice as fast as that for children, according to the new report.

As a result, annual adult admissions are approaching those of children, with adults now accounting for 36.5% of all congenital heart defect admissions. “The observed trend is likely due to a number...

News
Pixel Sweatshop
December 27, 2012
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THIS IS A MOMENTOUS ANNOUNCEMENT:

The American Board of Medical Specialties (ABS) announced the creation of physician certification in ACHD on December 5, 2012. The announcement of an ACHD subspecialty certification in the US nails ACHD down as an equal partner among other subspecialties. This decision is a landmark and a milestone in the young history of ACHD and transitions ACHD into a new era!

This announcement is available at http://www.cardiosource.org/News-Media/Publications/Cardiology-Magazine/...

This new ACHD subspecialty acknowledges efforts from multi-society stakeholders including...

News
Pixel Sweatshop
December 5, 2012
0

This article was posted on the theheart.org website on December 4, 2012.

Cincinnati, OH – Children and adolescents with pacemakers and implantable cardiac defibrillators (ICDs)—and their parents—suffer from a poorer quality of life than both healthy children and patients with mild forms of congenital heart disease, a new study reveals [1]. Whether lives could be improved with the use of psychotherapy needs to be assessed in this population, say Dr Richard J Czosek (Cincinnati Children’s Hospital Medical Center, OH) and colleagues in their paper published online December 4, 2012 in...

More

Check out how congenital heart disease stacks up against better recognized diseases in Canada! So many affected and so little awareness and funding! Get involved with CCHA, donate, and spread the word about the growing population of of "survivors" so that we can get the care and support we need to live long, healthy lives!

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