Trustee Openings

As we enter an exciting new phase of development under a new Chair of Trustees, we are looking for Trustees who can bring fresh expertise to our board.

We are particularly interested in recruiting:

• A Trustee with lived experience of a rare disease or of patient group leadership, to help ensure our work remains grounded in the real needs of our community and to guide patient-centred decision-making.
• A Trustee with financial expertise, to review and advise on our financial reporting, oversight, and strategic financial planning.
• A Trustee with fundraising and investment experience, especially someone able to help Beacon broaden its network and build long-term relationships with funders keen to support the charity on a sustainable basis.

As a Trustee, you will help set the strategic direction of Beacon for Rare Diseases, oversee the organisation’s activities, and support its ongoing growth. Your responsibilities will include ensuring compliance with charity regulations, financial stewardship, and working with the team on fundraising and partnership development. There will also be opportunities for advocacy and raising awareness about rare diseases at a national level, both through Beacon’s own events and projects, and representing Beacon in the wider rare disease community.

This is an exciting opportunity to influence the future of a charity that is expanding its reach and capabilities nationally and internationally, helping us to better serve our community and increase our impact.

Main duties and responsibilities

• Attend quarterly board meetings.
• Provide strategic advice and guidance to the CEO and staff.
• To provide oversight on the charity’s finances and governance – including the review of management accounts and contribution to the annual accounting process.
• To attend an annual day-long strategy meeting with the board and employees, and at least one Beacon event each year (reasonable travel expenses where in-person attendance is required will be covered).
• To provide support, advice or training for Beacon’s patient engagement events on an ad hoc basis and based on your experience.
• To advocate for Beacon and rare disease patient groups through your work and network, offering connections that support the organisation’s goals, and represent Beacon, our mission and interests at external events with the support or guidance of the CEO, board and Beacon team.
• To help ensure the sustainability of Beacon as an organisation and the fulfilment of our mission, to ensure no one walks their rare disease journey alone.

About You

We are looking for individuals who are committed to improving outcomes for people with rare diseases and who can bring fresh perspectives and expertise to our Board.

Specifically:

• For the lived experience role: personal experience of a rare disease or patient group leadership and a passion for advocacy and patient support.
• For the financial role: experience in financial management, reporting, auditing, or strategic financial planning.
• For the fundraising and networking role: experience in large fundraising campaigns – whether charitable or corporate investment – a diverse network, and success engaging with high-net-worth individuals.

You should be an enthusiastic team player, comfortable with governance and strategic discussion, and eager to help Beacon navigate its next chapter of growth.

Benefits of Joining

This is a voluntary role, but with potential to guide the continued growth and development of an ambitious charity, well positioned in the field of rare diseases – an issue likely to grow in importance and relevance with the rapid advances in genetic science, and the increased focus on health equality and equity in the UK and beyond.

You will get the opportunity to:

• Contribute to a pioneering, expanding charity with a vital mission.
• Gain governance experience and develop leadership skills.
• Be part of a passionate community making a real difference to lives affected by rare diseases.
• Play a key part in shaping the future direction of Beacon for Rare Diseases.

How to Apply

To apply please go to our website where you can find the full description of the trustee roles under the careers section of our website. This description includes the full details on how to apply for the roles.

The deadline for applications is 4th August 2025. Shortlisted candidates will first be invited for a phone conversation, followed by a formal interview process including the opportunity to meet the team and observe a Trustee meeting.