Connecting with Other Patients

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:

  • Why can’t I be normal?
  • I don’t like feeling different.
  • I wish I could keep up with my friends.
  • I don’t like looking different.
  • Why did this have to happen to me?
  • Is there anyone else like me?

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.

The Canadian Congenital Heart Alliance (CCHA).

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)

The Canadian Adult Congenital Heart Network (CACHNET)

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)

The Adult Congenital Heart Association (ACHA)

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)

Webinars for Adults with Congenital Heart Disease

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 program was developed by:

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