We aim to make quality of life assessment a routine and explicit consideration in care, management and clinical research in Huntington’s disease. This aim is strategically supported by a varied and enthusiastic international group of individuals from the breadth of the HD landscape, including patients, families, lay organisations, researchers, clinicians and care providers.

Previous and ongoing projects

We are interested in actively championing and facilitating quality of life assessment and improvement in Huntington’s disease. Some of the projects we are involved in are listed below.

  • Developing appropriate assessment tools to measure and chart quality of life in patients and carers.
  • Creating an online care and management resource for the Huntington’s journey.
  • Using psychological approaches to impact quality of life in Huntington’s.


Lead Facilitator:
Aileen Ho, Dr, Associate Professor

School of Psychology and Clinical Languages Sciences, University of Reading, UK.
Hon. Consultant Clinical Psychologist Royal Berkshire NHS Foundation Trust, UK.

Co-lead Facilitator:

European Huntington’s Association Liaison Officer

Associated EHDN Language Area Coordinator:

Asunción Martínez, EHDN Lanco,