Our partner organisations 💛

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.

Follow the links below to visit their websites.

Further support at antenatal diagnosis

ARC: Antenatal Results and Choices

ARC is a national charity helping parents and professionals through antenatal screening and treatment choices.

Tiny Tickers

Tiny Tickers exists to improve the early detection and care of babies with serious heart conditions.

Diagnosis-specific support and information.

Arrhythmia Alliance

A-A is a coalition of charities, patient groups, patients, carers, medical groups and allied professionals. They work together under the A-A umbrella to promote timely and effective diagnosis and treatment of arrhythmias.

Max Appeal

Max Appeal! is a UK registered charity supporting families affected by 22q deletion, VCFS and DiGeorge syndrome.

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.

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.

Regional congenital cardiac -charities

ECHO

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.

Families of Oceans Ward

Families of Oceans Ward offers support and local unit information to the families of children treated at Southampton General Hospital.

Young at Heart

Young at Heart offers support and local unit information to the families of children treated at Birmingham Children’s Hospital.

Keep the beat

Based in Leicestershire and supporting families treated at The East Midlands Congenital Heart Centre at Glenfield in Leicester.

Children’s Heartbeat Trust

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.

Amelia Matters

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.

Children’s Heart Surgery Fund

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

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.

The Brompton Foundation

The Brompton Fountain provides support, resources and equipment to children and their families at the Royal Brompton Hospital.

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.

Children’s Heart Association 

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.

Heart Link

A support group for parents and families who have a child suffering from a heart defect.

Heart Children Ireland

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.

CHUF

Being part of the CHUF family helps children who are born with or develop life-threatening heart conditions to achieve their dreams.

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.

Heartbeat Northern Ireland

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.

Support from broad focused national charities

The Children’s Heart Federation

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.

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.

Heartline Families

Heartline offers support and information to children with heart disorders and their families, whatever the condition, wherever it is treated.

British Cardiac Patients Association

BCPA ensures there is support, reassurance and practical advice freely available for cardiac patients, their families and carers.

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.

Other Support Services

Lagan’s Foundation

Lagan’s Foundation offers home respite and support services for young children with heart defects or feeding issues.

Education support

IPSEA

Independent Parental Special Education Advice

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 education needs.

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.

DLA Support

Citizens Advice Bureau

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.

Cruse Bereavement Care

Cruse Bereavement Care is here to support you after the death of someone close.

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.