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Heart Defects

If your child is affected by a medical condition or disability we can help. Call our freephone helpline on 0808 808 3555 to get information, support and advice. You can also browse our range of parent guides on aspects of caring for a disabled child in our resource library.

To meet other parents see support groups below or meet other parents online in our online community.

Please see below for reliable medical information on Heart Defects produced by alternative providers.

NHS website
www.nhs.uk/conditions

Although alternative links have been selected with great care, Contact cannot accept responsibility for any inaccuracies or errors. Alternative information providers comply with the Information Standard and give details of their quality control procedures on their website, which includes review of information by a qualified medical professional.

Is there support?

British Heart Foundation

Helpline: 0300 330 3311
Email: via website
www.bhf.org.uk

The Foundation is a Registered Charity in England and Wales No. 225971. It provides information and support to anyone affected by a heart condition, and produces publications specifically for children and young people. The Foundation funds research and promotes training in emergency life support skills. 

Group details last reviewed December 2020.

The Sommerville Foundation

Helpline: 0300 015 1998
Email: helpline@thesf.org.uk
www.thesf.org.uk

The Association is a Registered Charity in England and Wales No. 1138088. It provides information and support to young people and adults born with a heart condition. The Foundation holds specific events for young people aged 16-24. 

Group details last reviewed December 2020.

Heartline Families

Email: intouch@heartline.org.uk
http://www.heartline.org.uk

The Organisation is a Registered Charity in England and Wales No. 1153442. It provides information and support for families of children with congenital and acquired heart conditions. The Organisation offers subsidised caravan holidays, free wetsuits for babies and children with heart conditions, and a handbook for parents. 

Group details last reviewed December 2020.

SADS UK (Sudden Arrhythmic Death Syndrome)

Tel: 01277 811 215
Email: sadsuk@btconnect.com
www.sadsuk.org

The Trust is a Registered Charity in England and Wales No. 1113681. It provides information and support to individuals and families affected by cardiac conditions or a sudden cardiac death, including specific support for young people aged 10 years and above. The Organisation offers short breaks for individuals and families, support contacts in different parts of the country and qualified counsellors. 

Group details last reviewed December 2020.

Children's Heart Federation

Helpline: 0300 561 0065
Email: info@chfed.org.uk
www.chfed.org.uk

The Federation is a Registered Charity in England and Wales No. 1120557. It provides information and support to children with congenital or acquired heart disease and their families. The Federation gives small grants, produces a newsletter and is involved in research projects.

Group details last reviewed December 2020.

Arrhythmia Alliance

Helpline: 01789 867 501
Email: info@heartrhythmalliance.org
www.arrhythmiaalliance.org.uk

The Alliance is a Registered Charity in England and Wales No. 1107496.  It is a coalition of charities, patient groups, patients, carers, medical groups and allied professionals who work together to improve the diagnosis, treatment and quality of life for all those affected by arrhythmias. 

Group details last reviewed December 2020.

Cardiac Risk in the Young (CRY)

Tel: 01737 363 222
Email: cry@c-r-y.org.uk
www.c-r-y.org.uk

The Organisation is a Registered Charity in England and Wales No. 1050845. It provides information and support to young people diagnosed with cardiac conditions and offers bereavement support to families affected by young sudden cardiac death.

Group details last reviewed December 2020.

The following parent support groups are based around specific regional hospitals carrying out paediatric cardiac surgery or cover regional parts of the country:

ECHO (Evelina Children's Heart Organisation)

Tel: 020 7998 4710
Email: admin@echo-uk.org
www.echo-uk.org

The Organisation is a Registered Charity in England and Wales No. 1146494. It provides support for children and young people with heart conditions who receive treatment at the Evelina London Children's Hospital and the outreach clinics at local General Hospitals attended by Evelina Cardiologists. The Organisation supports their families and carers, and provides information, friendship and moral support from infancy to adulthood, especially at times of high anxiety.

Group details last updated December 2020.

Children's Heartbeat Trust

Tel: 02890 312228
Email: info@childrensheartbeattrust.org
www.childrensheartbeattrust.org

The Trust is a Registered Charity in Northern Ireland No. XT 21039. It provides emotional and practical support to parents and families of children with heart disease in Northern Ireland.

Group details last reviewed December 2020.

Scottish Association for Children with Heart Disorders (SACHD)

Email: secretary@youngheart.info
www.youngheart.info

The Association is a Registered Charity in Scotland No. SC035499. It offers information and support to parents and families of children with heart disorders in Scotland. The Association has seven local area branches and offer holiday breaks and family weekends.

Group details last reviewed December 2020.

Young at Heart

Information line: 0121 357 8200
Email: contactus@youngatheart.org.uk
www.youngatheart.org.uk

The Group is a Registered Charity in England and Wales No. 512815. It provides information and support to families of babies and children diagnosed with heart defects that are being or have been treated at Birmingham Children's Hospital. The Group offers regular ward visits to support parents, and brings families together through social events.

Group details last reviewed December 2020.

Children's Heart Association

Tel: 01706 221 988
Email: information@heartchild.info
www.heartchild.info

The Association is a Registered Charity in England and Wales No. 267893. It provides information and support to families with, or who have had, children with heart disorders. The Association works closely with paediatric cardiac units across England, and has branches in the North West of England, centered around Alder Hey Children's Hospital in Liverpool and the Royal Manchester Children's Hospital.

Group details last reviewed December 2020.