The HDA has a Juvenile Care Adviser, who can be contacted by email at firstname.lastname@example.org
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
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.
European Huntington’s Disease Network working group on Juvenile HD
Hopes pages from Stanford University on Juvenile HD
Huntington’s Disease Society of America Guide to JHD
Huntington Society of Canada Guide on JHD
Juvenile Huntington’s Disease: and Other Trinucleotide Repeat Disorders
Contact a Family
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
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
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.
Gives disabled children the chance to lead more independent lives.
Helps young people with disabilities to use leisure technology.
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
Happy Days Charity
Rays of Sunshine Children’s Charity
The Starlight Children’s Foundation
When You Wish Upon a Star
The Willow Foundation will organise and fund special days within the UK for seriously ill young adults between the ages of 16 and 40.
See our Juvenile HD: Children’s Hospices page ## Challenging behaviour
The Challenging Behaviour Foundation
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 is for people who grow up with a brother or sister with special needs, a disability or chronic illness.
Young carers groups can be very helpful. The following are two web sites that have information on young carers' issues and local groups.