Useful links and organisations
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The links to other organisations are provided strictly for the use and convenience of our users. Unless specifically noted, the appearance of a link does not constitute an endorsement or recommendation. CHSW is not responsible for the accuracy of material on linked websites, and cannot guarantee that links to external websites will work all of the time.
Extra help and resources
The leading UK charity for hospice care, information, support and advice
Contact a Family
Support, information and resources for families whose child is ill or disabled and for parents facing a diagnosis of abnormality during pregnancy.
Sibs is the only UK charity representing the needs of siblings of disabled people.
Together for Short Lives
The UK voice for children and young people who are not expected to reach adulthood and their families.
Sullivan’s Heroes is a charity offering fundraising support and financial assistance for families raising essential funds towards vital home adaptations for a disabled child.
Caudwell Children provide family support services, equipment, treatment and therapies for disabled children and their families across the UK
Through the power of technology and high-tech entertainments, Lifelites is the only children's charity striving to give children in hospices the chance to spend quality time with their families, the means to keep in contact with their school and friends, and simply to enjoy themselves.
Make-A-Wish Foundation UK
Make-A-Wish Foundation UK grants magical wishes to children and young people fighting life-threatening illnesses
My Adult Still My Child
Cruse Bereavement Care
Helping children cope with death
Childhood bereavement charity in the UK
Childhood Bereavement Network
Supports professionals working with bereaved children and young people
Child Bereavement UK
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.
Children and Families in Grief
Offer therapy to bereaved families.
The Counselling Directory
The Compassionate Friends
An organisation of bereaved parents and their families offering understanding, support and encouragement to others after the death of a child or children.
The Dove Service
The Dove Service offers counselling and support to those struggling with the impact of bereavement, significant loss, or life changing/limiting illness.
A Child of Mine
Support for bereaved parents
Tourism for All
A national charity that provides information on accessible holiday venues and places in the UK and abroad for disabled people, their carers and family.
The Disaway Trust
A registered charity that organises group holidays internationally and in the UK for people with physical disabilities aged 16 to 80 years and their carers.
Ataxia-Telangiectasia (A-T) is a progressive genetic condition which causes severe disability and shortens lives. The A-T Society works to improve quality of life and care for people living with A-T while promoting research to lengthen lives and find a cure.
Batten Disease Family Association
Formed in 1998 to provide support and advice to families/carers and healthcare professionals who have contact with a child with Batten Disease.
This charity provides support to any child and their family with a brain related condition (brain injuries, neurological disorders, mental disabilities, developmental problems).
Children Living with Inherited Metabolic Diseases is a national organisation working on behalf of children, young people, families, carers and support groups affected by metabolic diseases (genetic disorders).
Spinal Muscular Atrophy Support UK
Spinal Muscular Atrophy Support UK is the only national charity in the UK dedicated both to supporting people affected by SMA, and investing in essential research into causes, treatments and, eventually, a cure for the condition.
Muscular Dystrophy Campaign
The leading UK charity focusing on all muscle disease and providing support to anyone affected by muscle disease - children and adults who have a condition, and clinical, education, health and social care professionals.
The Muscle Help Foundation
Exists to deliver amazing and unforgettable experiences called Muscle Dreams in the UK for children and young people suffering from the muscle wasting disease Muscular Dystrophy
Duchenne Family Support Group
A national charity run by families for families affected by Duchennes Muscular Dystrophy, a severe neuromuscular disorder
Cystic Fibrosis Trust
Hosted by the Newlife Foundation for Disabled Children, this new service has been created by UK professionals to give families, patients and other professionals understandable, regularly updated key information.
The national charity with a focus on cerebral palsy, a non-progressive disorder of the areas of the brain which control movement. In depth information is available on their website on all aspects of cerebral palsy and disability.
SWAN UK (Syndromes Without A Name).
A charity which campaigns on behalf of families who have a child with an undiagnosed condition to gain equal rights and recognition. It provides support and information on a variety of subjects and links families together for mutual support.
Provides support to families with a child with a rare chromosome disorder.