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Heart Defects

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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 at www.makingcontact.org

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

NHS Choices
www.nhs.uk/conditions

Although alternative links have been selected with great care, Contact a Family 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 updated December 2014.

The Sommerville Foundation

Helpline: 0800 854 759
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 updated September 2014.

Heartline Families

Tel: 0330 022 4466
Email: admin@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 has two caravan holiday homes for families to use, runs activity projects for children aged 9-17, provides wetsuits for babies and children with heart conditions, and produces a practical handbook for parents. 

Group details last updated August 2014.

SADS UK

Tel: 01277 811 215
Email: info@sadsuk.org
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 updated August 2014.

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 in Pendlebury.

Group details last updated September 2014.

Children's Heart Federation

Helpline: 0808 808 5000
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 grants for medical equipment, financial assistance for specialist care needs and organises family support activities.

Group details last updated December 2014.

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

Arrhythmia Alliance

Helpline: 01789 867 501
Email: info@heartrhythmcharity.org.uk
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 updated December 2014.

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 updated December 2014.

ECHO (Evelina Children's Heart Organisation)

Tel: 07715 208 077
Email: admin@echo-evelina.org.uk
www.echo-evelina.org.uk

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. It also supplies equipment to the hospital which will improve the patient/family experience both as an inpatient and at home.

Group details last updated January 2014.

Children's Heartbeat Trust

Tel: 075 8416 4815
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 updated December 2014.

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 a young adults group.

Group details last updated August 2014.

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 updated September 2014.

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