HDANI works throughout Northern Ireland providing support, information, advice and social connections to those living with the impact of Huntington’s Disease. We run regional support groups, provide telephone and face to face advice and support as well as opportunities for families to connect through our events and befriending services.
We also work closely with medical professionals to advocate for the most effective care for our clients and lobby the Executive for improved and efficient services. We provide training and awareness-raising events and keep our service users informed of the latest research and medical advances in the quest for effective treatments and ultimately a cure.
The Association is dependent on a small but dedicated team of staff and volunteers who are committed to providing the best possible outcomes to our service users.

About Huntington’s Disease Association Northern Ireland (HDANI)

  • Our Mission Statement: The Huntington’s Disease Association Northern Ireland’s mission is to secure the best quality of life for people living with Huntington’s and their families and to work with others towards the effective management and eventual eradication of the disease.
  • Our Vision: The Huntington’s Disease Association Northern Ireland’s vision is for those affected by HD to be empowered and supported to live as normal a life as possible.
  • Finances: Our Most recent accounts can be found here.

Trustee Profile

Trustees are responsible for the legal stewardship of HDANI. This involves ensuring that HDANI is compliant with legislation and its own governing documents. The trustee role carries with it a number of legal director duties that trustees are expected to understand. We expect all our Trustees to be aware of the Charity Governance Code. In particular, our Trustees should be committed to our cause and have joined our board because they want to help us deliver our purpose; they should understand their roles and legal responsibilities, be committed to good governance and want to contribute to our continued improvement.

What we need you to do:

Ensure HDANI is carrying out its purposes for the public benefit
● ensure you understand HDANI’s purposes as set out in its governing document
● plan what HDANI will do, and what you want it to achieve
● be able to explain how all of HDANI’s activities are intended to further or support its purposes
● understand how HDANI benefits the public by carrying out its purposes

Comply with our governing document and the law
● make sure that HDANI complies with its governing document
● comply with charity law requirements and other laws that apply to HDANI

Act in HDANI’s best interests
● do what you and your co-trustees (and no one else) decide will best enable HDANI to carry out its purposes
● with your co-trustees, make balanced and adequately informed decisions, thinking about the long-term as well as the short-term
● avoid putting yourself in a position where your duty to HDANI conflicts with your personal interests or loyalty to any other person or body
● not receive any benefit from HDANI unless it’s properly authorised and is clearly in HDANI’s interests; this also includes anyone who is financially connected to you, such as a partner, dependent child, or business partner

Manage our resources responsibly
● make sure HDANI’s assets are only used to support or carry out its purposes
● not take inappropriate risks with HDANI’s assets or reputation
● not over-commit HDANI
● take special care when investing or borrowing
● comply with any restrictions on spending funds

Act with reasonable care and skill
● must use reasonable care, making use of your skills and experience and taking appropriate advice when necessary
● should give enough time, thought, and energy to your role, for example by preparing for, attending, and actively participating in all trustees’ meetings
Ensure HDANI is accountable
● be able to demonstrate that HDANI is complying with the law, is well-run, and effective
● ensure accountability within HDANI, particularly where you delegate responsibility for particular tasks or decisions to staff or volunteers

Person Specification

Commitment to the values and objectives of HDANI

Excellent communication skills
1. Ability to persuade and influence stakeholders to promote the interests of the charity
2. Good listening skills and an openness to the contributions of others
3. Provides thoughtful and reasoned contributions to Board debate

Bespoke skills in any of the following;
1. Fundraising
2. Financial management
3. Human Resources
4. Policy development
5. Company Secretary
6. Charity/Community/Voluntary Sector management
7. Health/social care statutory services

Acts as an ambassador of the charity, including representation at external events
Promotes trust and effective working relationships with other Trustees, staff, and external bodies
Acts with integrity and to high ethical standards
Ability to inspire and motivate others to maximise their talents and abilities
Seeks to develop others and offer constructive support

Additional Information
This position is un-remunerated, however, reasonable expenses will be covered.

Time commitment
Quarterly Board meetings – These meetings are usually for one hour in the morning and trustees are expected to review papers in advance and attend all meetings either in person or by joining virtually.

Sub-committee meetings may be established depending on operational needs.
Attendance at annual AGM and strategy sessions.

How to Apply

If you are interested, please email with a copy of your CV and a cover letter outlining;
1. Why you are attracted to the role
2. Relevant experience which you feel demonstrates your ability to fulfill the role
3. How you meet the person specifications required for the post
Selection Process
1. Stage 1 – initial call with CEO, Sorcha McPhillips
2. Stage 2 – interview with CEO/Trustees
Recruitment will be subject to reference checks and will be undertaken on an ongoing basis due to the need to refresh the board seats every three years.