Voluntary Trustee

Division: Board of Trustees

Responsible to: Chair, Board of Trustees

Hours: Participation in quarterly Board of Trustees meetings (2 face-to-face on Saturdays + 2 online in evenings), typically 2-3 hours each plus similar preparation time. 

Participation in at least one Board of Trustees sub-group (Governance & Succession/ Finance/ Research or other established sub-groups). These typically meet quarterly for 1 to 2 hours plus similar for preparation time.Location: Remote/in person

Salary: Unpaid with reimbursement of expenses

• Advertised from: 9 September 2025
• Closing date: Open
• Interview date: To be arranged upon application
• Interview location: To be arranged upon application

Becoming a TrusteeThis is an exciting and strategic time to our strong and committed

who bring a wealth of experience and ability to Scottish Huntington’s Association.

Board of Trustees

Reporting to the Chair of the Board of Trustees, you will play a key role in developing and implementing strategies that enable the charity to grow its support for families across Scotland, while also ensuring it applies and promotes the highest standards of governance required by third sector regulators, funders, our staff and, crucially, the people we serve.

These roles would suit persons who have retired or are currently in a high level leadership position in the public, private or third sector organisation. We welcome applications from interested people who have worked at director level with experience of:

• Communications/Marketing
• Fundraising and income generation
• Human Resources

Furthermore, we are especially interest in hearing from people with personal experience of Huntington’s disease, the third sector, working or supporting people with a long term health condition, statutory funding and partnership working, and a record of growing support.

Why should you get involved?Trustees are exposed to a wide range of skills needed to oversee a charity: strategy and business planning, governance, HR, finance, marketing, fundraising, evaluation, property law and more. It can be an effective way to build your skills and your CV, and you will gain invaluable insights that can benefit your career and other professional commitments. 

By donating your skills, time and attention to an important cause, you will help to deliver lifechanging support in Scotland that is relied upon by an often overlooked and marginalised community. This includes people with the disease, their loved ones and carers, and young people growing up in Huntington’s families.

Key responsibilitiesMaximising our impact:
Nowhere else in the world delivers the level of support to the Huntington’s community as Scottish Huntington’s Association. As one of our most senior leaders you will help to set strategic direction, make sure resources are being used effectively, and ensure the organisation delivers best possible services for Huntington’s families.

Sharing of expertise:
With collective legal responsibility for the direction and performance of the charity, you will contribute a wealth of knowledge and skills to the organisation, joining a highly experienced Board that includes expertise in youth work, law, finance, education, healthcare, research, governance, operations and strategy.

Good governance:
Required to act with appropriate care and diligence in the interests of the organisation, Trustees are obliged to comply with duties such as financial and other reporting to the Scottish Charity Regulator (OSCR), as set out in Section 66 of the 2005 Charities and Trustee Investment (Scotland) Act.

This governance structure ensures that Scottish Huntington’s Association mission and values – the principles upon which the charity was founded by families – underpin all our work and meet the standards expected by donors, volunteers, partner organisations and the community we serve.

More information about the roles and responsibilities of charity trustees.

Additional information:Scottish Huntington’s Association is committed to equality of opportunity and to providing a service that is free from unfair and unlawful discrimination. We therefore aim to ensure that no applicant, volunteer, or member of staff is unfairly treated on the grounds of offending background.

The charity is now in the third year of Standing Tall: A Strategy For Growth 2023 – 2028 to transform the care and support of Huntington’s families, expand specialist services and deepen involvement in research and clinical trials.

About Scottish Huntington’s AssociationPeople impacted by Huntington’s disease need specialist services to cope with a severe and complex disease, its impact on families, and a lack of awareness amongst health and social care providers and the wider public.

Scottish Huntington’s Association is the only charity in the country exclusively dedicated to providing expert and personalised support for those impacted by Huntington’s disease.

Our personalised support reduces unnecessary hospital admissions, supports carers and other family members; lowers household poverty; and alleviates wellbeing risks to children and young people living in Huntington’s families.

We are commissioned by NHS Boards and Health and Social Care Partnerships throughout the country to share our expertise with front-line staff and build support for improved services and higher standards of care for every family impacted by this devastating disease. Scottish Huntington’s Association plays a full and active role in attracting the global research community to Scotland to work in partnership with us to improve the lives of families impacted by Huntington’s disease.

Joining Scottish Huntington’s Association

You will be part of an organisation that delivers real change for families every day (see our Impact Report 2024/25), advocates at the highest levels on their behalf to ensure the sustainability of specialist services, and promotes the expertise and commitment of its employees, driven by our values and our mission. (See our 2025 Staff Survey results)

To join this unique organisation, founded by families for families and recognised at national and international levels for its ability and support, please follow the application notes below.

Application notesFor an informal discussion and to find out more about the application process please email

in the first instance.

recruitment@hdscotland.org