Guess what? A lot of people are born with congenital heart conditions. In fact, it’s the most common birth defect! There are now more adults than children living with CHD!A lot of people are born with congenital heart conditions. In fact, it’s the most common birth defect! There are now more adults than children living with CHD!
We sometimes hear patients say things like:
Everybody has things they can’t do or aren’t good at. It can help to focus on what you want to do and can do instead of what you can’t.
It can also help to talk with other patients with CHD. But don’t take our word for it. You can check out these websites to connect with other people with CHD.
This is the patient group that represents Canadians with CHD! Their website has a lot of useful info. They have regular social events and have even started a camp (The Beat Retreat) for adults with CHD.
The site has regular updates with new info, so you might want to add it to your favourites list and check it out often.
The Canadian Congenital Heart Alliance (CCHA)
This was started in 1991 to link CHD health care providers all across Canada. But it’s not just for doctors and nurses. If you click at the top of the home page where it says Patients, you’ll find a message board where you can communicate with other Canadians with CHD.
The Canadian Adult Congenital Heart Network (CACHNET)
This is an awesome patient group based in the United States but anybody can join. It’s a great site to check out because it has a message board where adults with CHD can connect with one another. There are over 7000 registered members on the message board!
If you’re traveling, you should definitely visit this site. It has a list of Adult CHD programs throughout North America, and access to listings for programs around the world.
The Adult Congenital Heart Association (ACHA)
The Adult Congenital Heart Association offers Webinars on various topics related to living with congenital heart disease.
Click here to check out the schedule for upcoming Webinars as well as watch past Webinars
This website is designed specifically for young people with congenital heart disease. The goal is to provide information to help people who are getting ready to move (or have recently moved) to adult heart care. We use the term ‘transition’ to describe this process. Family, friends and health care providers may also find this website helpful.
Please be advised this site does not provide medical advice. All of the content on this website is provided for informational purposes only. It is not a substitute for professional medical advice, diagnosis or treatment. If you have or suspect you have a health problem, please consult your family physician. If you have or suspect you are experiencing a health emergency, please promptly visit a Hospital Emergency Department in your area. Reliance on any information provided on or provided in relation to the site is solely at your own risk. Contributors to this website are not responsible, nor liable, for any claim, loss or damage arising from the use of the information contained within this site.
Any websites linked from this website are created by other organizations. Those organizations are responsible for the information contained within their sites. We are not responsible for the content of linked third-party sites or third-party advertisements and do not make any representations regarding their content or accuracy. Your use of third-party websites is at your own risk and subject to the terms and conditions of use for such sites. Any specific comments regarding these sites should be directed toward that individual organization.
We have a simple ‘Getting to Know You’ survey that we ask all visitors to complete (we don’t ask for any personal health information). Website browsing activity will be monitored so that we can learn about the people who visit the website, how often people visit the website, and the web pages that are visited most often. This will help us decide which changes and improvements to make to the website in the future. Results from this project will be described for groups of website visitors (i.e., not for individual users).
Anyone can visit this website and most users will create their own User IDs and passwords. However, there are also Adult Congenital Heart Disease (ACHD) and pediatric cardiology programs that have officially joined the iHeartChange team and work together to keep this website going. (You can find a list of the ACHD programs in the ‘Welcome to Adult Care’ section of the website). Some of these programs might choose to assign User IDs so that they can track of and how patients from their own programs visit the website. They might even want to track this for research. If you have been assigned a User ID from a program, that program might ask us to give them information about your answers to the ‘Getting to Know You’ survey, how many times you log into the website and which web pages you visit.
Please click here for the full Terms and Conditions for this website
Please click below to indicate that you have read the Disclaimer.
We recommend that you register by creating your own User ID and password.
This will allow you to log in again and keep track of which pages on the website you visit.
If you visit them all, you can earn a transition diploma!
If you register, it also means that you won’t be shown the disclaimer & survey each time that you visit.
However, registration is not required.
Reminder: please write down your User ID and password for safekeeping
because we don’t store your email address for password reset!
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We are almost there!
Now we would like to get to know you just a little bit.
Knowing your background will help us make this website even better for you.
We won’t ask you for personal health information.
This short survey will only take a minute or two to complete.
We hope you enjoy your visit!
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HELPING YOU MAKE THE MOVE TO ADULT CONGENITAL HEART DISEASE CARE
Thanks for checking out our website!
This website is designed mainly for young people with congenital heart disease (CHD). The aim is to help people feel more ready to “transition” from pediatric to adult care. And we know that family, friends and health care providers might also want to check it out!
Since this is your first visit, please read our disclaimer!
