Children's Liver Disease Foundation

Children's Liver Disease Foundation

At a glance

Causes

  • Campaigning
  • Children / families
  • Health and well being / research and care
  • Physical disabilities
  • Young people

Other details

Geographical remit: 
National - Britain

Objectives

CLDF’s MISSION is to be the voice for babies, children, young people and their families, ensuring that childhood liver diseases are understood, prevented and outcomes optimised through excellent research, effective information and emotional support.

Today the charity works in four main areas across the UK,

  • providing support for families and young people affected by childhood liver disease.
  • funding medical and social research.
  • providing educational services to the general public and the medical profession.
  • providing a voice for all affected by childhood liver disease.

The charity works closely with the three UK specialist paediatric liver centres: Birmingham Children’s Hospital, King’s College Hospital, London and Leeds General Infirmary.

 

 

 

Activities

Support

We support children aged 0-25years who are affected by childhood liver disease and their extended families. Approximately 1000 children are diagnosed annually.

Family Support

  • Following diagnosis CLDF responds immediately to a family's first needs: information, advice and support by phone, e-mail or in person.
  • CLDF gives families and patients the opportunity to share their experiences.
  • CLDF helps families to adjust to life with liver disease with a tailored, one to one service.
  • Liver disease may affect a child's social and educational development and family relationships - CLDF offers practical advice and emotional support.
  • Parents may feel lonely and isolated - CLDF provides a feeling of belonging to a supportive community.

CLDF provides support in a number of ways including digital, telephone and email services, face to face meetings with parents and young people at hospitals and clinics and through a number of annual Family days and residential weekends

Young People’s Support

Growing up can be a stressful time but it is even more difficult when a young person is coping with a serious, chronic condition such as liver disease. They have the same aspirations, needs and desires as their peers but can feel frustrated, limited and defined by their illness. Often they feel lonely, isolated and misunderstood.

 CLDF offers a range of support and advice to these young people as they live with and learn to manage their liver condition independently, and move from childhood to adulthood, and from children’s to adult services.

The charity also provides opportunities for young people to develop their self-esteem and self-confidence and opportunities for young people to come together and build a community so that they can support each other.

The charity provides support to young people in a variety of ways; face to face, through specialist social media platforms, apps, via telephone and email , clinic and ward visits and at our young peoples residential projects , Breakaway, Talk Tell Transform and The Weekender which are held throughout the year.

Information and Education

CLDF provides a comprehensive information hub in relation to all liver diseases of childhood, ranging from medical literature to information supporting families and young people living with a liver disease. Information events are also managed by the charity.

CLDF's Yellow Alert campaign assists healthcare professionals and the general public to recognise and take action on the signs and symptoms of potentially life-threatening neonatal liver disease. During the year we also exhibit at a number of health care conferences to raise awareness of childhood liver disease

Research

The charity has invested over £9 million in research projects relating to childhood liver disease since its inception. We currently have 10 ongoing research projects

We have been instrumental in funding research which has led to very significant developments in the care and understanding of childhood liver disease.

Our programme is overseen by a Scientific Committee of eminent scientists and clinicians which ensures that we invest in projects that will enhance the understanding of paediatric hepatology and make a difference to the lives of our beneficiaries.

In addition, we seek to encourage researchers and to provide opportunities for families and young people to help define research priorities, enhance researchers' proposals and take part in research, through our new Research Hub service.

Facts and Figures      

There are over 100 different liver diseases that affect children, with around 1,000 children being diagnosed per year in the UK.

In 2017 we

  • Supported nearly 3,000 families and young people.
  • Reached 700 people through our clinic visiting programme.
  • Distributed 16,000 medical and support leaflets and 11,000 Yellow Alert packs .
  • Awarded five research grants.
  • Developed and launched a new Transplant Book resource for children.

No current opportunities

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