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Useful links and organisations

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Disclaimer

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
 

Hospice UK

The leading UK charity for hospice care, information, support and advice
www.hospiceuk.org
 

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.
www.cafamily.org.uk
 

Sibs

Sibs is the only UK charity representing the needs of siblings of disabled people.
www.sibs.org.uk
 

Together for Short Lives

The UK voice for children and young people who are not expected to reach adulthood and their families.
www.togetherforshortlives.org.uk
 

Sullivan’s Heroes

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.
www.sullivansheroes.org
 

Caudwell Children

Caudwell Children provide family support services, equipment, treatment and therapies for disabled children and their families across the UK
www.caudwellchildren.com
 

Lifelites

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.
www.lifelites.org
 

Make-A-Wish Foundation UK

Make-A-Wish Foundation UK grants magical wishes to children and young people fighting life-threatening illnesses
www.make-a-wish.org.uk
 

Whizz-Kidz
A charity which aims to give mobility to physically-disabled children in the UK.

www.whizz-kidz.org.uk
 

Family Lives
Parenting and family support online, via a helpline and through parenting classes

www.familylives.org.uk
 

My Adult Still My Child


myadultstillmychild.co.uk/about-us


Bereavement

Cruse Bereavement Care
www.cruse.org.uk
 
Grief Encounter

Helping children cope with death
www.griefencounter.org.uk
 

Winston's Wish

Childhood bereavement charity in the UK
www.winstonswish.org.uk

 

Childhood Bereavement Network

Supports professionals working with bereaved children and young people
www.childhoodbereavementnetwork.org.uk

 

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.
www.childbereavementuk.org

 

Children and Families in Grief

Offer therapy to bereaved families.
www.childrenandfamiliesingrief.co.uk

 

The Counselling Directory

www.counselling-directory.org.uk

 

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.
www.tcf.org.uk

 

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.
www.thedoveservice.org.uk

 

A Child of Mine

Support for bereaved parents
www.achildofmine.org.uk


Accessible holidays

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.
www.tourismforall.org.uk

 

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.
www.disaway.co.uk


Specific information

Ataxia-Telangiectasia (A-T)

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.
www.atsociety.org.uk

 

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.
www.bdfa-uk.org.uk

 

Cerebra

This charity provides support to any child and their family with a brain related condition (brain injuries, neurological disorders, mental disabilities, developmental problems).
w3.cerebra.org.uk

 

Climb

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).
www.climb.org.uk

 

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.
www.smasupportuk.org.uk

 

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.
www.muscular-dystrophy.org

 

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
www.musclehelp.com

 

Duchenne Family Support Group

A national charity run by families for families affected by Duchennes Muscular Dystrophy, a severe neuromuscular disorder
dfsg.org.uk

 

Cystic Fibrosis Trust

www.cysticfibrosis.org.uk

 

Newlife

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.
www.newlifecharity.co.uk

 

SCOPE 

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.
www.scope.org.uk

 

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.
undiagnosed.org.uk

 

Unique 

Provides support to families with a child with a rare chromosome disorder. 
www.rarechromo.org/html/home.asp