Resources

Juvenile HD

HDA Support

The HDA has a Juvenile Care Adviser, who can be contacted by email at helen.santini@hda.org.uk

HDA Information

The HDA produce a range of factsheets on JHD available from our factsheets page.

A wide range of information on JHD is available on our JHD pages

General information

Huntington’s Disease Youth Organisation (HDYO)

Web: hdyo.org

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.

European Huntington’s Disease Network working group on Juvenile HD

Web: www.euro-hd.net/html/network/groups/jhd

Hopes pages from Stanford University on Juvenile HD

Web: hopes.stanford.edu

Huntington’s Disease Society of America Guide to JHD

Web: HDSA

Huntington Society of Canada Guide on JHD

Web: Huntington Society booklets and publications

Juvenile Huntington’s Disease: and Other Trinucleotide Repeat Disorders

Web: www.amazon.co.uk

Practical assistance

Contact a Family

Web: www.cafamily.org.uk

Contact a Family provide advice and support for parents caring for a disabled child or a child with a specific health condition e.g., working and caring for a child, benefits, school issues (special educational needs and the transition period). There is also information for siblings, fathers and grandparents. They have a useful newsletter with lots of helpful information.

REACT - Rapid Effective Assistance for Children with potentially Terminal Illnesses

Web: www.reactcharity.org

React provide rapid assistance to families, for example by giving: help with travelling expenses, help with funeral expenses, a washing machine, clothing and bedding, a telephone, a special mattress, an electric wheelchair, holidays in one of it’s four holiday homes.

Roald Dahl Foundation

Web: www.roalddahlfoundation.org

The Roald Dahl Foundation can provide small grants of up to £500 to provide financial assistance to help families cope with financial difficulties when faced with caring for a sick child (e.g., subsistence expenses, travel expenses to and from hospital, specialist equipment, appliances and payment of utility bills). The foundation assists families with a child/young adult (up to 25 years old) with a neurological or heamotological condition.

Whizz-Kidz

Web: www.whizz-kidz.org.uk

Gives disabled children the chance to lead more independent lives.

Special Effect

Web: www.specialeffect.org.uk

Helps young people with disabilities to use leisure technology.

Epilepsy

Epilepsy Action

Web: www.epilepsy.org.uk

They provide a number of services, including a freephone helpline (0808 800 5050) and information for children/teenagers. A useful contact if epilepsy-related issues are causing difficulties for you.

Children’s wish charities / special days

Dreams Come True Charity

Web: www.dctc.org.uk

Happy Days Charity

Web: http://www.happydayscharity.org

Make-A-Wish

Web: www.make-a-wish.org.uk

Promise Dreams

Web: www.promisedreams.co.uk

Rays of Sunshine Children’s Charity

Web: www.raysofsunshine.org.uk

The Starlight Children’s Foundation

Web: www.starlight.org.uk

When You Wish Upon a Star

Web: www.whenyouwishuponastar.org.uk

Willow Foundation

Web: www.willowfoundation.org.uk

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

Children’s hospices

See our Juvenile HD: Children’s Hospices page ## Challenging behaviour

The Challenging Behaviour Foundation

Web: www.thecbf.org.uk

The CBF provide information and support to parents and professionals caring for individuals with severe learning disabilities and challenging behaviour. They have a number of leaflets that may also be helpful to parents of children with JHD with challenging behaviour.

Brothers & sisters

Sibs

Web: www.sibs.org.uk

Sibs is for people who grow up with a brother or sister with special needs, a disability or chronic illness.

Young carers

Young carers groups can be very helpful. The following are two web sites that have information on young carers' issues and local groups.

Web: www.youngcarers.net
Web: www.youngcarer.com

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