Little Hearts Matter works in partnership with many other organisation and support services. If you are seeking support closer to home or a special support service the following information may be helpful.

Other national and regional support services

Further support at antenatal diagnosis Focus Contact details
ARC: Antenatal Results and Choices ARC is a national charity helping parents and professionals through antenatal screening and treatment choices. Twitter:
http://www.arc-uk.org08545 077 2290
0207 713 7486
Tiny Tickers Tiny Tickers exists to improve the early detection and care of babies with serious heart conditions. Twitter:
Diagnosis-specific support and information. Focus Contact details
Arrhythmia Alliance A-A is a coalition of charities, patient groups, patients, carers, medical groups and allied professionals. Although these groups remain independent, they work together under the A-A umbrella to promote timely and effective diagnosis and treatment of arrhythmias. Twitter:
01789 867 501
Max Appeal! Max Appeal! is a UK registered charity supporting families affected by 22q deletion, VCFS and DiGeorge syndrome. Twitter: – open group:
0300 999 2211
Contact a Family Contact a Family is a national charity for families with disabled children.
It provides information, advice and support, and brings families together so they can support each other.
0808 808 3555
Down’s Heart Group Down’s Heart Group is a national charity offering support and information relating to heart conditions associated with Down’s Syndrome. Twitter:
0300 102 1644
Together for Short Lives Together for Short Lives is the ‘leading’ UK charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them. They support families, professionals and services, including children’s hospices. Twitter:
0808 8088 100
Regional congenital cardiac -charities Focus Contact details

Linked to the Evelina Children’s Hospital in Guy’s and St. Thomas

ECHO is a charity that offers support and local unit information to any child, and family, receiving treatment at the Evelina Children’s Hospital.
They also offer teen-specific information and events.
07715 208077
The Brompton Fountain

Linked to the Brompton Hospital

The Brompton Fountain provides support, resources and equipment to children and their families at the Royal Brompton Hospital. Website:
03300 22 92 91
Families of Oceanward

Linked to Southampton General Hospital

Families of Oceans Ward offers support and local unit information to the families of children treated at Southampton General Hospital. Website:
The Bristol and South West Children’s Heart Circle The Heart Circle was founded in the 1970s to support children and their families undergoing cardiac surgery in Bristol. Website:
0870 125 2307
Young at Heart

Linked to Birmingham Children’s Hospital

Young at Heart offers support and local unit information to the families of children treated at Birmingham Children’s Hospital. Website:
0121 357 8200
Children’s Heart Association

Linked to Alder Hey and Manchester Children’s Hospital

Based in the North West of England, the Children’s Heart Association offers support and local unit information to the families of children treated at Alder Hey and Manchester Children’s Hospital. Website:
01706 221988
Keep the Beat

Linked to Glenfield Hospital

Based in Leicestershire and supporting families treated at The East Midlands Congenital Heart Centre at Glenfield in Leicester. Website:
07932 746703
Heart Link

Linked with Glenfield Hospital

A support group for parents and families who have a child suffering from a heart defect. Website:
Children’s Heart Surgery Fund

Linked with Leeds Children’s Hospital

Children’s Heart Surgery Fund is a charity providing support for children and adults born with congenital heart defects and their families. Website:

Linked with The Freeman Hospital Children’s Cardiac Unit

Being part of the CHUF family helps children who are born with or develop life-threatening heart conditions to achieve their dreams. Website:
0191 281 3166
Amelia Matters

Based in Wales

Amelia Matters is an organisation that helps to support children who suffer from congenital heart disease (CHD). By educating and raising awareness they aim to help children living with CHD and their families. Website:
07850 956455
The Scottish Association for Children with Heart Disorders SACHD offers support for families where a child or young adult in Scotland has a congenital heart condition. Website:
BraveHearts Bravehearts is a Scotland-wide branch of the SACHD for adults with congenital heart disease (CHD). It was set up in 1996 after the European Heart Conference. It is run by people with CHD for people with CHD. Website:
Heartbeat Northern Ireland

Linked to The Royal Belfast Hospital for Sick Children

Heartbeat-NI is a parent-led voluntary charity whose aims are to provide emotional and practical support to families who have children with heart conditions. Helpline:
07801 37 02 97
Children’s Heartbeat Trust

Linked to the Royal Belfast Hospital for Sick Children

Works closely with Clark Clinic at the Royal Belfast Hospital for Sick Children to ensure that children with heart disease and their families receive the best care, treatment and support possible. Website: (0) 28 9031 2228
Heart Children Ireland

Linked to Our Lady’s Hospital in Crumlin, Dublin

Provides practical support for our members in any way possible: this includes setting up local groups, the purchase of medical equipment, financial assistance to families, the funding of specialist posts and special events for the children and their families. Website: 353 1) 8740990
Support from broad focused national charities Focus Contact details
Children’s Heart Federation (CHF) The Children’s Heart Federation is dedicated to helping children with congenital or acquired heart disease and their families in Great Britain and Northern Ireland. It acts as a signposting resource to other organisations and works to forward the care of children with congenital and acquired conditions within arenas for change. Twitter:
0808 808 5000
Heartline Families Heartline offers support and information to children with heart disorders and their families, whatever the condition, wherever it is treated. Twitter:
033 00 22 44 66
The Somerville Foundation The Somerville Foundation works with adult patients born with a heart condition, providing practical and emotional support, and enabling them to take control of their lives and manage their own heart condition. Twitter:
0800 854 759
British Cardiac Patients Association BCPA ensures there is support, reassurance and practical advice freely available for cardiac patients, their families and carers. Website:
British Heart Foundation (BHF) The British Heart Foundation is the UK’s ‘number one’ heart charity. Their vision is for a world where no one dies of heart diseases prematurely. It carries out pioneering heart research, vital prevention and survival activity and works to ensure quality care and support for everyone living with heart disease. Twitter:
0300 330 331
Other support services Focus Contact details
Lagan’s Foundation Lagan’s Foundation offers home respite and support services for young children with heart defects or feeding issues. Website: 46 8300
Education support
IPSEA Independent Parental Special Education Advice Website:
0800 018 4016
The Information, Advice and Support Services Network (IASS Network) The Information, Advice and Support Services Network (IASS Network) supports and promotes the work of Information, Advice and Support (IAS) Services across England. It is based at the Council for Disabled Children. Website:
Advisory Centre for Education ACE provides advice and information to parents and carers on a wide range of school-based issues, including exclusion, admissions, and special educationneeds. Website:
0808 800 5793
DLA support
Citizens Advice Bureaux CAB aim to provide the advice people need for the problems they face and improve the policies and practices that affect people’s lives.
They provide free, independent, confidential and impartial advice to everyone on their rights and responsibilities. They value diversity, promote equality and challenge discrimination.
Bereavement support
SANDs SANDs supports anyone who has been affected by the death of a baby before, during or shortly after birth. SANDs offers emotional support and information for parents, grandparents, siblings, children, families and friends, health professionals and others. Website:
020 7436 5881
Cruse Bereavement Care Cruse Bereavement Care is here to support you after the death of someone close. Website:
0844 477 9400
The Child Bereavement UK Supports families and educates professionals when a baby or child of any age dies or is dying, or when a child is facing bereavement. Website:
0800 02 88840

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