HDA Support

The HDA has a dedicated youth worker who runs the HDA Youth Engagement Service (HDYES), this is available for any young person aged 11-22 living in a family affected by HD. For more information contact Adam by email at

More information for children and young people is available on these sections of our website.

HDA Information

The HDA produce a factsheet for parents and one for teenagers, both are available from our factsheets page.

A booklet is available for younger children via our shop at £1.50 (Huntington’s Disease in the family – A booklet for young children).

Huntington’s Disease Youth Organisation (HDYO)


HDYO provides information, education and support for young people impacted by Huntington’s Disease. It was created by, and is run by young people with HD in the family.

Contact a Family

Web: Helpline: 0808 808 3555

Contact a Family provides advice, information and support to the parents of all disabled children - no matter what their disability or health condition. We also enable parents to get in contact with other families, both on a local and national basis. Each year we reach at least 275,000 families. Information on money for equipment etc.



Kids guides disabled children towards mainstream inclusion in their communities and give their parents respite, guidance and support.


Web: What Surestart does

The Government’s programme to deliver the best start in life for all children by education, childcare and family support.

Action for Children


Formally known as NCH, Action for Children helps vulnerable children and young people in the UK. They offer:

  • Adoption services
  • Disability services
  • Supporting families
  • Education
  • Foster care services
  • Health and well being
  • Participation and children’s rights
  • Residential services
  • Youth services

National Society for the Prevention of Cruelty to Children


Run services for children, young people and their families including:

  • Childline
  • Support in schools
  • There4me website for young people
  • Therapeutic services


Web: Free confidential helpline: 0800 1111

Children’s Society


The children’s society defends, safeguard and protect the childhood of all children. They have a network of children’s centres and run initiatives in mentoring, participation and advocacy.



Barnodos services include counseling, fostering and adoptions, vocational training and disability inclusion groups.

The Children’s Trust


The Children’s Trust services range from special education for children with profound and multiple learning disabilities to short breaks, transitional, palliative and long term care.

Dreams Come True Charity


Tel: 0800 018 6013

Makes dreams come true for young adults between 2 and 21 who are suffering from a serious or terminal illness.

Starlight Children’s Foundation

Web: Tel: 020 7262 2881

Starlight Children’s Foundation aims to brighten the lives of seriously and terminally ill children (aged 4 - 18) by granting their wishes and providing hospital entertainment to help take their minds off the pain, fear and isolation oftheir illness.

Rays of Sunshine Children’s Charity

Web: Tel: 020 8782 1171

Rays of Sunshine Children’s Charity exists to grant the wishes of terminally and seriously ill children between the ages of 3-18 who live in the United Kingdom.

Promise Dreams

Web: Tel: 01902 212451

This charity raises money for children (0-18) who are seriously or terminally ill and provide treatment, help and support for both them and their families. Whether the child would like a holiday, a toy, medical treatment or equipment, or even the chance to meet their favourite celebrity, Promise Dreams is dedicated and committed to help.

Round Table Children’s Wish


Tel: 01202 514 515

Grants wishes to children under the age of eighteen. The aim is to fulfil a child’s secret dream whether it is to meet their own heroes and idols from the worlds of sport, television and popular music, or perhaps to give them the opportunity to swim with dolphins, have a ride in a sports car or even make a parachute jump. For others, a quiet holiday with family members or the gift of a computer or playhouse may be their ideal wish.


Web: Tel: 01276 40 50 60

Make-A-Wish grants magical wishes to children and young people fighting life-threatening illnesses.

When You Wish Upon a Star

Web: Tel: 0115 9791720

When You Wish Upon a Star aims to grant the wishes of children aged 2-16 who are suffering from a life-threatening illness.


Web: Tel: 01707 259777

The Willow Foundation will organise and fund special days within the U.K. for seriously ill young adults between the ages of 16 and 40.

Afraid for Kids

Web: Afraid for kids

A book for children “at-risk” for Huntington’s disease

Hopes for Kids


Talking to Kids book by Bonnie Hennig


Information about Bonnie Hennig’s book ‘Talking to Children about HD’.

Winston’s Wish

Web: Tel: 08452 030405

Winston’s Wish helps children rebuild their lives after the death of a parent or sibling, enabling them to face the future with hope. They offer practical support and guidance to families, professionals and anyone concerned about a grieving child.

Child Bereavement Charity


There are sections for bereaved families, young people, schools and professionals.

Childhood Bereavement Network


Tel: Support and Info Line 020 7843 6309

A federation of organisations and individuals working with bereaved children and young people, has a directory of local and national support.

Scottish Huntington’s Disease Association

Web: Scottish HDA Youth pages


Web: Tel: 01535 645453

Sibs support people who are growing up with a disabled sibling.

Bryan’s dad has HD


An illustrated introduction to HD for kids and families

Photobar marathon Photobar small virgin Photobar small justgiving Photobar hdyo
Photobar small appg Photobar skydive