The Children's Heart Federation

The Children's Heart Federation (CHF) is the leading national charity championing children with heart conditions.

For nearly 40 years CHF has been dedicated to empowering these children, their families and carers. CHF works in partnership with cardiac networks, units and teams across the country to support children with all heart conditions, both congenital and acquired.

CHF helps and supports children with heart conditions and those who care for them in many ways.

Sharing information via information sheets, these include details of 24 different heart conditions and information relating to caring for heart children e.g. advice on feeding a child with a heart condition, dental care, talking to doctors and many more topics.

CHF also offers support and advice via an information phone line which is answered by a team of dedicated healthcare professionals to provide support and guidance in times of need.

Other resources we provide include supporting medical needs, such as INR machines (to check coagulation levels in children on blood thinners) which reduces regular trips to hospital. We also provide support tools for children with heart conditions; Molly’s Dollies are provided free of charge for children undergoing surgery or having treatment for a heart condition. The dolls can be scarred to match the children’s surgical scars. As well as using the dolls to help them understand their own scars, children can take them to medical appointments and to accompany them on hospital stays. CHF also produces Rosie goes red, Violet goes blue a booklet that explains about a heart condition to young children and Sky the expert, a book for primary school children, which follows a day in the life of Sky, a little boy with a serious heart condition.

We provide digital support tools for parents and carers including a series of Coffee and questions online events. The events have covered a range of subjects relating to heart conditions in children, presentations from guest speakers and opportunities to ask questions and have discussions. Speakers have included a cardiologist, a play therapist, a dentist, a dietician and a head teacher. We run ‘Pulse Parents’, a private Facebook forum, where parents can discuss topics relating to their child’s condition and share congenital heart disease news and research via the e-newsletter Heart2Heart.

CHF are dedicated to supporting research projects across the globe to help make the future a brighter place for children with heart conditions. We recently worked on a priority setting partnership for children’s heart conditions due to be published soon.

CHF also works tirelessly to advocate for the needs of children with heart conditions to be recognised; advising policy makers and service providers on how the needs of children with heart conditions should be met, campaigning for improvements in health and social care, educational provision for young CHD patients and promoting better awareness and support for heart children and families via a social media presence on Facebook, Twitter and Instagram. During the latter part of 2022 CHF recruited a new Chief Executive Officer, Rajwant Kaur Singh. Rajwant has already made connections with partner charities and affiliates, attended conferences, visited care units, met with children, families, carers, and those with lived experience of heart conditions across the country.

Rajwant spoke of the mission and vision for CHF. “Our vision is that all children with heart conditions have their medical and social needs met, so they can live the fullest life possible. Our mission is to provide recognition, research, and resources to support those affected by children’s heart conditions. We work collaboratively with individuals and organisations to inform, inspire and improve the lives of children with congenital and acquired heart disease".

With this new appointment, CHF are planning the next steps and preparing a new five-year strategy to continue to support children with heart conditions and those who care for them across the country.

CHF would love parents and carers to become more involved with our work and activities.

To find out more subscribe to the CHF e-newsletter email info@chfed.org.uk