Project information

Huntington's Disease Advisory Service

The Huntington’s Disease Association (HDA) is the only organisation providing a dedicated service of advice, guidance and support for people in England and Wales who are devastated by Huntington’s disease.
We run a regional Specialist HD Advisory service to support those directly affected by the di

Our project is ongoing

Charity information: Huntington's Disease Association

Huntington's Disease Association logo
  • Need


    There are approx 6,000 people suffering from Huntington’s in the UK. For every person diagnosed another four people are at risk. That’s 24,000 people whose lives will, at some point, be turned upside down by the anguish of waiting for a diagnosis, or taking their chances without. These people are referred to as ‘at risk’ and may exhibit early signs of HD, such as slight uncontrollable muscular movements, stumbling and clumsiness, lack of concentration, short term memory lapses


    Our HD Advisers are a vital lifeline helping HD sufferers to navigate the complex care, health and emotional needs of the condition. Our advisers provide practical information, give advice and emotional support to families, identify local services, coordinate the organisation of care packages and answer crisis calls.
    Our aim is to ensure that individuals living with HD receive the best possible care at home, to help families stay together for as long as possible.

  • Aims

    Aim 1

    Reduce Isolation for those families living with HD


    » The advisory service ensures no one faces HD alone, there is a professional who is expert on the disease working regionally to support families

    What success will look like

    Through surveys and evaluation after visits

    Aim 2

    Improves Heath care professionals understanding of the disease


    » We provide training and information sessions for all heath care professionals caring for a person with HD including GP's and health care staff.

    What success will look like

    Through feedback and evaluation of training provided

    Aim 3

    We ensure carers feel supported and have the abilities needed to care of their loved ones


    » We run training and carers days and facilitate branch and support group meetings regionally.

    What success will look like

    Through regular updates and surveys of our members

  • Impact


    A better general understanding of this devastating hereditary complex degenerative neurological disease.


    Lack of up take of our service - but our advisers work regionally informing healthcare professionals and families that we are here to help


    We provide 6 moth and yearly impact report and will update progress on our website

  • Budget

    Budget - Project Cost: £24,947

    Loading graph....
      Amount Heading Description
      £24,947 Salary Salary costs for one post
  • Background


    We are a National Charity working regionally. We have 23 advisers that cover England and Wales


    All those families facing Huntington's disease. HD affects each person differently, making diagnosis, treatment and care a chaotic challenge. Some patients endure mainly physical degeneration and dementia. Others suffer from debilitating mental illness — depression, paranoia, schizophrenia — while also enduring the spasmodic muscle contractions that twist the face and hands, constantly affecting the patient’s balance and ability to move and speak. As their muscles deteriorate, they lose the abil

  • Why Us?

    Why Us?

    only organisation providing a dedicated service of advice, guidance and support for people in England and Wales who are devastated by Huntington’s disease. We are experts in this misunderstood disease - it is rare so not many healthcare professionals encounter it - so when they do they turn to us for advice.

    Read more about the Charity running this project.


    Anita Daly - Adviser

    Adviser for Merseyside & IOM