Managing your heart condition.

If you are an adult living with a heart defect, you should have regular access to a cardiologist. This is vital to ensure you talk about about treatments, medicines, and the ongoing and long-term care for your specific CHD condition.

Armed with this knowledge you can make the best possible choices for your health.

When seeing a CHD Specialist, Cardiologist or GP it helps to know your medical history. This  includes:

  • Type of heart defect you have
  • Procedures or surgeries you have had performed
  • Medications that are currently prescribed for you and were prescribed in the past
  • Type(s) of care you need.

The right, ongoing medical care will help children and adults with a congenital heart defect to live as healthy a life as possible.

Check out our Frequently Asked Questions on living with and managing a heart condition.

Find out more about

Different kinds of Congenital Heart Defects

Helping you make healthy decisions

Get your Personal Health Passport and manage your heart condition more effectively.


With your help, we’ve helped fund new and improved treatments for congenital heart disease. we opened the UK’s first dedicated Congenital Heart Research Centre. we’ve organised receptions at the House of Lords and House of Commons, a film première, concerts, parachute jumps, marathon runs, annual sponsored walks and masquerade balls. we ensure that adult CHD patients enjoy access to every opportunity, are free from discrimination, and are fully supported throughout their lives. we’ve staged annual conferences, regional patient information days and workshops throughout the UK. we’ve published a range of leaflets for CHD patients on a wide-range of topics. we’ve launched a Freephone patient helpline to provide practical advice, a listening ear, and emotional reassurance at times of stress. we’ve created online networks where congenital heart patients can connect with each other. we successfully applied for a Comic Relief grant to help develop mental health support services. we’ve contributed to adult congenital heart disease nurse training days and taken part in various study days and conferences for medical and health professionals. we’ve established a benevolent fund for members who are in financial hardship. we’ve organised residential weekends and outward bound holidays for teenagers and adults, providing congenital heart patients with the opportunity to meet and gain support from each other.

Just think what else we could do if you donate, fundraise or volunteer for us.


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