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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: heartmatters@bhf.org.uk
www.bhf.org.uk

The Foundation is a Registered Charity in England and Wales No. 225971. It funds research into the causes, prevention, diagnosis and treatment of heart disease. It educates the public, health professionals and heart patients about heart disease and promotes training in emergency life support skills. It has information available, including publications specifically for children and young people.

Group details last updated December 2013.

Sommerville Foundation

Helpline: 0800 854759
Email: helpline@thesf.org.uk
www.thesf.org.uk

The Association is a Registered Charity in England and Wales No. 1138088, established in 1993. It publishes a quarterly newsletter, provides help and advice and raises awareness of the needs of adults (16+) with congenital heart defects. The Association is supported by the British Heart Foundation.

Group details last confirmed March 2013.

HeartLine Association

Tel: 03300 224466
Email: admin@heartline.org.uk
http://www.heartline.org.uk

The Association is a Registered Charity 295803, established in 1979. It supports children with heart disorders and their families, whatever the condition, wherever it is treated in the UK and Ireland. The Association provides information on congenital heart defects, a handbook for parents, contact between families through an online forum, activity weekends, social events and a regular newsletter.

Group details last confirmed August 2013.

SADS UK

Tel: 01737 363222
Email: info@sadsuk.org
www.sadsuk.org

The Trust is a Registered Charity in England and Wales No. 1113681, established in 2000. It offers support, information and one-to-one linking for families of affected children and affected individuals. It also offers support to bereaved families and raises awareness about rare arrhythmia conditions such as cardiomyopathies, long QT syndrome, Wolf-Parkinson White syndrome and Brudada syndrome. The Trust provides information and works with medical advisers.

Group details last confirmed December 2012.

The Children's Heart Association

Tel: 01706 221988
Email: information@heartchild.info
www.heartchild.info

The Association is a Registered Charity in England and Wales No. 267893, established in 1973. It offers support to the families of children with heart disorders, or parents who are bereaved because their child had a heart disorder. The Association has a network of branches, publishes regular newsletters and has information available.

Group details last confirmed March 2013.

The Children's Heart Federation

Helpline: 0808 808 5000 (Mon-Fri 9.30am-4.30pm)
Email: info@chfed.org.uk
www.chfed.org.uk

The Federation is a Registered Charity in England and Wales No. 1120557. It is dedicated to helping children with congenital or acquired heart disease and their families. The Federation offers information and advice, gives grants for equipment and support, and provides services for its member groups.

Group details last updated December 2013.

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, The Heart Rhythm Charity

Tel: 01789 450787
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. The Alliance provides information, support and advice and aims to raise awareness and improve diagnosis, treatment and quality of life of people affected by arrhythmias.

Group details last updated November 2013.

Cardiac Risk in the Young (CRY)

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

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

Group details last updated December 2013.

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.

Heartbeat - The Northern Ireland Children's Heart Charity

Tel: 07801 370297
Email: mckibbin@btinternet.com
www.heartbeatni.com

The Charity is a Registered Charity in Northern Ireland No. XR78474, established in 1984. It offers support and parent contact through ward visits and a network of locally based groups. Heartbeat fundraises for equipment for the Clark clinic at the Royal Belfast Hospital for Sick Children. It has a group for teenagers, publishes a twice yearly newsletter and has information available.

Group details last updated January 2013.

Heart Link

Helpline: 0500 382152
www.heartlink-glenfield.org.uk

The Group is a Registered Charity in England and Wales No. 513946, established in 1981. It is organised round the Glenfield Hospital in Leicester and covers Leicestershire, Derbyshire, Lincolnshire and Nottinghamshire. It offers support, contact and practical help for parents of affected children and publishes a newsletter. The Group has over 1,600 members.

Group details last updated confirmed January 2013.

Scottish Association for Children with Heart Disorders (SACHD)

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

The Association (formerly part of the Association for Children with Heart Disorders) is a Registered Charity in Scotland No. SC035499, established in 1973. It offers support and understanding in everyday care and welfare to parents and families of children with heart disorders. It publishes a newsletter and has information available.

Group details last confirmed March 2013.

Young at Heart

Information line: 0121 357 8200
Email: youngatheartsue@yahoo.co.uk
www.youngatheart.org.uk

The Group is a Registered Charity in England and Wales No. 512815, established in 1981. It offers help and support to families of babies and children diagnosed with heart defects that are being/or have been treated at Birmingham Children's Hospital and works closely with professionals there. The Group offers support through its support line, ward visits and social events, publishes a quarterly newsletter and has information available.

Group details last confirmed March 2013.

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