Management accountant volunteer roles in newmarket, england

Are you passionate about making a meaningful impact in the rare disease community?

Are you interested in supporting the growth of a thriving charity that is expanding its reach and ambition?

If so, Beacon for Rare Diseases is looking for at least two new Trustees to help shape our future and strengthen our support for individuals and families affected by rare conditions.
 

About Beacon for Rare Diseases

Beacon for Rare Diseases is a small but growing charity dedicated to transforming outcomes for those living with rare diseases by building a united rare disease community with patient groups at its heart.

Patient groups are a lifeline for rare disease patients and their families. When a rare diagnosis is made, many people are simply handed a one-page Google printout of the condition and told to go home and live their lives as best as they can. No one knows anything about the condition. There is no treatment. There is nothing anyone can do. The alarming lack of knowledge, support and understanding from the healthcare sector propels these individuals and families into isolation with more questions than answers.

Patient groups break this isolation by connecting people with shared conditions, helping them share experiences, answering questions, and driving change in neglected rare diseases. At Beacon, we help these patient groups form, grow, and professionalise – helping them be the best they can be to support the whole rare disease community.  

Since founding in 2012, we have expanded our programmes and outreach, aiming to improve diagnosis, treatment, and support services across the UK and beyond. In this time, we have supported over 400 rare disease patient groups. As such, our patient group Empowerment Programme continues to drive our organisation’s core mission: we have over 600 users on our e-learning platform, The Resources Hub, and had 296 live training event attendees in the last year.  

This core patient group training is now supplemented by a leading role in the European REMEDi4ALL consortium for drug repurposing, and a role in the Hub for LifeArc’s new Translational Centres for Rare Disease. Our growing project diversity and impact is driven by our enthusiastic and committed team, which has grown from three people in 2018 to a peak of 12 staff in 2024-25. This charity also benefits from a stable leadership group, with our CEO and COO spending 10 and 9 years respectively at Beacon.

“Beacon helps make what seems impossible, possible.”

The trustee role

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.

About the Role

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

Please send your CV and a short cover letter outlining your interest and relevant experience to the email in the full job description. We welcome applications from diverse backgrounds and are committed to equality and inclusion.

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.
 

FAQs

What is the time commitment?
Trustees typically meet quarterly, with additional time required for committee involvement and specific projects. We estimate around 4–6 hours per month, adaptable to your availability.

How long is the term for a Trustee?
Beacon does not currently have a fixed term of trusteeship, though trustees are required to resign and seek re-election by the board every two to three years. We may explore more fixed term appointments in the future and would look for at least a two-year commitment from any new trustees.

Where are meetings held?
The majority of meetings are held online using zoom. In person strategy days are generally held in Cambridge, close to the train station, though locations in central London may also be explored for face-to-face meetings in the future.

Do I need to be a UK citizen, or based in the UK?
No. Beacon is open to appointing trustees from outside the UK, but, as a UK registered charity we need to retain a majority of our board and our focus within the UK. If you are seeking to apply for this position from beyond the UK, we recommend you contact Beacon to discuss your application in advance.

I have no prior experience as a trustee – can I still apply?
Absolutely. We welcome applications from all backgrounds and will provide support and resources to help you succeed in the role.

At a time when we are experiencing the largest reforms to the welfare rights system in a generation, we believe this is an exciting opportunity for individuals interested in welfare rights work, to join a respected organisation working at the forefront of the advice sector.

The Welfare Benefits Unit offers specialist welfare benefits advice to those who work with members of the public. Our experienced advisers provide independent support through our advice line, publications, training, consultancy, campaigns and projects.

The Welfare Benefits Unit aims to maximise benefit take-up, helping to reduce the incidence and impact of poverty and in doing so improve health, well-being, financial and social inclusion. We are a registered charity based in York. We primarily operate in North Yorkshire and York although some of our services are accessed by organisations working further afield. 

We continue to aim towards a board that reflects the populations we work to support, and as such, welcome individuals from diverse ethnic communities, LGBTQIA+ groups, as well as younger people, those with disabilities, and those who have lived experience of the welfare benefits system.

Knowledge, Skills and Experience

We welcome and support applications from those new to being a Trustee. We also know that studies have shown some people are less likely to apply for positions unless they believe meet every requirement in the description. The most important thing for us is to find Trustees that connect with our values and who can readily buy into our mission. Though we have suggested skills and experience areas below, which would be keen to hear from, we’re eager to meet people that believe in our mission and can contribute to our board in a variety of ways – not just candidates who tick all the boxes.

We’re keen to add these areas of skills and experience to our board:

• Financial, legal or HR matters (especially as they may apply to a small charity)
• Expertise in marketing, digital or similar technological areas
• Welfare benefits system and welfare rights advice or lived experience.

About the Role

All Trustee positions are voluntary with reasonable expenses remunerated. To be an effective Trustee, you will need to commit up to 1-2 days per quarter to attend and prepare for board meetings which are held virtually.

Effective Trustees support our work by:

• ensuring we are working towards our vision, mission and values in everything we do
• ensuring the effective and efficient use of resources, maintaining proper financial and regulatory oversight and best practice as a charity
• approving the annual budget, and supporting strategic decision-making by actively contributing advice and guidance
• appointing key personnel such as the Chief Executive, and determining pay and conditions for the wider team
• constructively guide the Senior Leadership Team in the delivery of the organisation’s strategy
• actively representing and championing the work of the Welfare Benefits Unit.