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Is there support?
First Floor
2-4 Great Eastern Street
London
EC2A 3NW
Tel: 0808 808 5000 Helpline
Tel: 020 7422 0630
Fax: 020 7247 2087
e-mail: info@chfed.org.uk
Web: http://www.chfed.org.uk
The Federation is a National Registered Charity No. 800525, established in 1987. The Federation is a national charity which represents 21 regional heart organisations across the U.K. They provide information and support, medical equipment and grants, and campaign to improve the clinical and social care of children with heart conditions.
Group details last updated August 2007.
26 Elizabeth Drive
Helmshore
Rossendale
BB4 4JB
Tel: 01706 221988
e-mail: information@heartchild.info
Web: http://www.heartchild.info
The Association is a National Registered Charity No. 267893, established in 1973. It covers England and Wales and offers support for the families of children with heart disorders (or those who have lost such a child) through a network of branches. It publishes regular newsletters and has information available, details on request.
Group details last confirmed October 2007.
104 Comiston Road
Edinburgh
EH10 5QL
Tel: 0131 447 2711
e-mail: secretary@youngheart.info
Web: http://www.youngheart.info
The Association was formerly part of the Association for Children with Heart Disorders. It is a Registered Charity No. SC035499, established in 1973 and registered in 2004. It offers support and understanding in everyday care and welfare to parents and families of children with heart disorders. It publishes a newsletter ‘Heartbeat’ and has information available, details on request. SACHD is an organisation under the umbrella of the Children’s Heart Foundation.
Group details last updated February 2008.
Saracen’s House Business Centre
25 St Margaret’s Green
Ipswich
IP4 2BN
Tel: 0800 854759 Helpline
e-mail: info@guch.org.uk
Web: http://www.guch.org.uk
GUCH PA (Grown up Congenital Heart Patients’ Association) is a National Registered Charity No. 1041866, established in 1993. GUCH PA is supported by the British Heart Foundation. It offers support for adolescents and young adults via their helpline and through their website. It aims to raise awareness of the needs of young people with congenital heart disorders. GUCH PA publishes a quarterly newsletter 'GUCH News' and has information leaflets available, details on request.
Group details last updated November 2007.
Suite 6
Churchill House
Horndon Pk
Station Road
Essex
CM13 3XD
Tel: 01277 811215
e-mail: info@sadsuk.org
Web: http://www.sadsuk.org
SADS UK (Sudden Adult Death Trust) is a National Registered Charity No. 1113681, established in 2000. The trust 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. It provides information and has medical advisers. SADS UK works closely with SADS America, Canada, Australia and Europe.
Group details last updated May 2008.
14 Fitzhardinge Street
London
W1H 6DH
Tel: 08450 708070 Heart helpline
Tel: 020 7935 0185
Fax: 020 7486 5820
e-mail: hearthelponline@bhf.org.uk
Web: http://www.bhf.org.uk
The British Heart Foundation is a National Registered Charity No. 225971, established in 1961. 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 a wide range of information available, including publications specifically for children and young people from pre-school to 18 years old, details on request.
Group details last updated November 2007.
The following parent support groups are based around specific regional hospitals carrying out paediatric cardiac surgery or cover regional parts of the country:
68 Rockhill Drive
Mountsorrel
Leicester
LE12 7DT
Tel: 0500 382152 Helpline
Web: http://www.heartlink-glenfield.org.uk
The Group is a National Registered Charity 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. It publishes a newsletter. The Group has over 1,200 members.
Group details last confirmed September 2008.
42 Thetford Road
Great Bar
Birmingham
B42 2HY
Tel: 0121 357 8200 Information Line
e-mail: youngatheartsue@yahoo.co.uk
Web: http://www.youngatheart.org.uk
Young at Heart is a National Registered Charity No. 512815, established in 1981. It offers help and support to families of babies and children diagnosed with heart defects. Young at Heart provide a support line and regular ward visits for parents during their time in hospital with their sick child. It works closely with the Heart Unit at the Birmingham Children’s Hospital and aims to bring the families together at social events, where they can meet with other families, share experiences and the children make new friends. Young at Heart publishes a quarterly newsletter and has information available, details on request. It supports over 500 families.
Group details last updated March 2008.
Unit 7
Epsom Downs Metro Centre
Waterfield
Tadworth
KT20 5LR
e-mail: cry@c-r-y.org.uk
Web: http://www.c-r-y.org.uk
Web: http://www.sads.org.uk
Web: http://www.cry-csc.org.uk
Cardiac Risk in the Young (CRY) is National Registered Charity No. 1050845, established in 1995. It offers support to bereaved families through a nationwide network of trained volunteers and holds a bereavement support day. The CRY Surgery Supporters Club helps young people who have had major surgery to link for mutual support. CRY promotes diagnostic procedures, offers proactive cardiac screening and raises awareness of the issues surrounding cardiac risk in the young. It publishes a quarterly newsletter and has a wide range of information available, details on request.
Group details last confirmed February 2008.
Longhill Farm
Ditcheat
Shepton Mallet
BA4 6QR
Tel: 07885 195418
e-mail: ange1events@aol.com
Web: http://www.wchc.org.uk
The Group is a National Registered Charity No. 800877, established in 1988. It covers Hampshire, Dorset, the Channel Islands, part of Somerset, Wiltshire, Plymouth area and parts of Cornwall. It offers support and local contact for families of affected children together with financial support where necessary while at the cardio-thoracic unit at Southampton Hospital. It publishes a newsletter and has information available, details on request. The group has over 500 members.
Group details last updated May 2008.
Community Link
Surrey Heath House
Knoll Road
Camberley
GU15 3HH
Tel: 01276 707636
Fax: 01276 707642
e-mail: admin@heartline.org.uk
Web http://www.heartline.org.uk
The Association is a National Registered Charity No. 295803. It offers support and information on aspects of congenital heart disease in babies and children and parent contact through a nationwide network of groups often centred round a local hospital with a regular paediatric cardiac outpatients clinic. It publishes a quarterly newsletter and has a wide range of information available, details on request. The Association has over 1,400 families in membership.
Group details last confirmed February 2008.
9 Turloughs Hill
Annalong
Newry
BT34 4XD
Tel: 028 4376 8786
e-mail: irwynmckibbin@heartbeatni.org.uk
Web: http://www.heartbeatni.co.uk
The group is the support arm of the Northern Ireland Children’s Heartbeat Trust which is an organisation recognised by the Inland Revenue as a Charity and which acts as Trustee for Heartbeat. It offers support and parent contact through ward visits and a network of locally based groups. Heart Beat fundraises for equipment for the Clark clinic at the Royal Belfast Hospital for Sick Children. It has a ‘Beating Hearts’ group for teenagers, publishes a twice-yearly newsletter and has information available, details on request.
Group details last updated May 2008.
PO Box 5015
Brighton
BN50 9JR
Tel: 01273 248 948
e-mail: admin@echo-evelina.org.uk
Web: http://www.echo-evelina.org.uk
ECHO (Evelina Children’s Heart Organisation) is a National Registered Charity No. 287475. It supports families of children born with heart conditions, who are treated at the Evelina Children’s Hospital within Guy’s and St Thomas’ hospitals and their satellite clinics in greater London, Surrey, Kent, Essex, Sussex, Middlesex, Suffolk and Norfolk. It supports it members either by providing contact with other families from it’s network of over 650 members or by supplying further information. It also arranges social and fundraising events.
Group details last updated July 2008.
The Hollies
67 Ryecroft Road
Frampton Cotterell
Bristol
BS36 2HJ
Tel: 08701 252307
e-mail: info@heartcircle.org
Web: http://www.heartcircle.org
The Group is a National Registered Charity No. 267323 for the families of all children with heart conditions who live in the South West of England and Wales. It offers support and visiting for families. It publishes an annual newsletter and has information available, details on request. The Group has over 500 families in membership.
Group details last updated March 2008.
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