Scottish Huntington’s Association is the only charity in Scotland dedicated exclusively to improving the lives of people who are impacted by Huntington’s disease. It was founded by families in 1989 and continues to work in partnership to this day with the community it serves.

The charity’s family-centred approach and focus on delivering change for local communities is recognised and replicated at national and international levels as a model of excellence in the care and support of the Huntington’s disease community.

  • SHA provides lifeline support through a network of HD Specialists who deliver the personalised and expert services families need.


  • Financial Wellbeing Officers reduce hardship by, for example, supporting with household budgeting, debt management, access to benefits, grants and allowances, and managing energy bills.


  • Our Youth Service provides 1-2-1 outreach, peer support, summer camps and workshops to build the resilience, confidence and knowledge our young people need to cope with the challenges of today and prepare for what’s to come.


  • The pioneering National Care Framework for Huntington’s Disease is considered across the world as an essential lever drive up health and social care for all families impacted by Huntington’s disease. It is the first resource of its kind for families impacted by Huntington’s disease and use by professionals in the health and social care sectors.


  • We hold Carers’ and Family Conferences to bring families together to reduce isolation and support the mto connect and learn from one another, improve health and wellbeing, find out more about services they can access, and hear from leaders in care, support and research.


  • As a grassroots charity, Scottish Huntington’s Association relies on the commitment and kindness of supporters to raise awareness, build the case for transformational changes in care, and help fund the essential services relied upon by the families we serve.