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Patients and relatives

We aim to improve the provision of help and advice so that all the issues Huntington’s disease families face can be addressed.

In particular we aim to help address issues including:

  • concerns about possible risk
  • management of people with advanced Huntington's disease
  • questions about involvement in research

Support and services

South Wales Huntington's Disease Service

The South Wales HD service offers an essential lifeline to patients who carry the HD gene and their families, ranging from patients who are gene positive and asymptomatic to those with advanced and end-stage disease, and those cared for in a nursing home setting.

BRAIN Involve

BRAIN Involve is a public and patient involvement group that brings together patients, carers and academics to shape cutting-edge research into neurological and neurodegenerative diseases, including people who are affected by Huntington’s disease.

Huntington's Disease Association

The Huntington’s Disease Association England & Wales (HDA) is a charity which supports people affected by Huntington’s disease and provides information and advice to professionals.