Account manager volunteer volunteer roles in Birmingham

Trustee Role Description

Our trustees play a vital role in making sure that Caudwell Youth achieves its core purpose. They oversee the overall management and administration of the charity. They also ensure that we have a clear strategy and that our work and goals are in line with our vision. Just as importantly, they support and challenge the executive team to enable Caudwell Youth to grow and thrive, and through this, shape young people’s futures.

Board members have a collective responsibility. This means that trustees always act as a group and not as individuals.

Trustee Duties

• Support and provide advice on Caudwell Youth’s purpose, vision, goals and impact.
• Contribute to the strategic direction of Caudwell Youth, approving strategy and annual plans.
• Ensure that key risks are being identified, monitored and controlled effectively.
• Oversee financial plans and budgets and monitor and evaluate progress.
• Review and approve Caudwell Youth’s annual report and accounts.
• Provide support and challenge to the CEO and executive team, in accordance with our values.
• Promote youth engagement in all that we do Keep abreast of changes in Caudwell Youth’s operating environment.
• Contribute to regular reviews of Caudwell Youth’s own governance.
• Attend Board meetings, adequately prepared to contribute to discussions.
• Use independent judgment, acting legally and in good faith to promote and protect Caudwell Youth’s interests, to the exclusion of their own personal and/or any third party interests.
• Act as an ambassador for Caudwell Youth by applying your skills, expertise, knowledge and contacts.

What We Are Looking For
We are looking for people willing to bring energy, enthusiasm and commitment to the role, and who will broaden the diversity of thinking on our board.

Personal Skills and Qualities

• A commitment to Caudwell Youth’s vision, mission and values 
• Knowledge and/or interest in youth issues
• Ability to think creatively and strategically, exercise good, independent judgement and work effectively as a board member.
• Effective communication skills and willingness to participate actively in discussion.
• A strong personal commitment to equity, diversity and inclusion.
• Willingness to lead according to our values.
• Commitment to Nolan’s seven principles of public life: selflessness, integrity, objectivity, accountability, openness, honesty and leadership.

In addition to these, we are particularly looking for skills and experience in charity marketing and communications, as well as public sector funding / commissioning.

We want to grow our volunteering so experience here would also be welcome. As a young people’s charity we are also interested in applications from younger people and those with lived experience aged 18 and over.

Terms of Appointment

Terms of Office

• Trustees are appointed for a 3 year term of office, this can be renewed for a second term. (Maximum of 6 years service).
• This is a voluntary position, but reasonable expenses are reimbursed.
   

Time Commitment

• Preparing for, and attending, 4 Board meetings annually. Currently meetings are held 5.30-7.30pm online.
• A strategy day in person in London/Milton Keynes.
• Ad hoc and occasional support through working groups and / or support to the executive team.

The Anglo-Danish Society is seeking a Treasurer with relevant qualifications and experience to take on the important role of managing all aspects of its finances, including compliance with the law and charitable regulations, in addition to accounting.

Our Treasurer will need to have relevant accounting/ financial qualifications and experience. Previous experience of being a Trustee would be a help. The ideal person will need to be able to work with an all-volunteer managing Council who care about the Society and its work, particularly the Scholarship Programme.

The Treasurer is responsible for transaction accounting, paying accounts, scholarship grants payment, sales invoicing, investments and deposits, membership subscriptions, event budgeting, preparing accounts for audit, giving a report to the Annual General Meeting, providing an annual report to the Charities Commission, making an annual Gift Aid claim and other related administration, as required. 

All business is conducted in English and there is no need to know Danish!

Make a Difference with Essex Respite & Care Association (ERCA)

Are you experienced in finance or accounting and looking for a rewarding way to give back to your local community?

At Essex Respite & Care Association (ERCA), we are seeking a Volunteer  to join our charity and help support the important work we do for adults living with dementia, mental health conditions, and other long-term health needs across Essex.

This voluntary role requires approximately 2–3 hours per week and offers the opportunity to use your financial skills to make a real difference.

The Role

• Maintain oversight of the charity's financial records.

• Help keep our accounts up to date and well organised.

• Prepare and review profit and loss reports and other financial information.

• Work alongside the Charity Manager and Board of Trustees to support good financial governance.

• Provide financial guidance where appropriate.

About You

• Experience in accounting, bookkeeping, finance, or a similar financial role.

• Good organisational skills and attention to detail.

• Confident working with financial information.

• A commitment to supporting a local charity and its values.

A full handover will be provided by our outgoing Treasurer, ensuring you have the support needed to settle into the role.

This is a fantastic opportunity to use your skills to help a well-established local charity continue providing vital support to people across Essex.

If you would like to find out more, we'd love to hear from you.

Accounting for International Development is seeking an experienced charity finance professional to support a UK-registered charity working internationally to strengthen responsible, low-impact small-scale fisheries.

The organisation works with coastal communities, fishery stakeholders and market actors to improve fisheries practices, support responsible sourcing, strengthen policy engagement and contribute to better livelihoods and food security.

They are now looking for a remote volunteer to review and strengthen their finance systems, reporting routines and use of Xero. Some finance processes, reporting and budget monitoring are currently managed outside the system, and they would value an experienced finance professional who can help them improve consistency, accuracy and the usefulness of financial information provided to senior management and Trustees.

This is not a day-to-day finance role. The assignment is intended as an independent review and strengthening exercise, working with the Managing Director, Finance Manager and selected Trustees to identify practical improvements and develop a realistic action plan.

Key areas of support may include:

• Reviewing current finance processes, month-end routines and reporting timelines.
• Reviewing how Xero is currently being used, including any processes or reporting managed outside the system.
• Supporting improvements to monthly management accounts and Board reporting.
• Reviewing internal controls, financial procedures and consistency of finance processes.
• Identifying key financial risks, control gaps or areas where processes could be strengthened.
• Advising on forecasting, budget monitoring and how project managers provide information to the finance team.
• Supporting the Finance Manager to strengthen monthly reporting and budget versus actual monitoring.
• Providing practical suggestions, templates or examples where helpful.
• Helping develop a clear, proportionate action plan with priorities and timelines.

We are looking for someone with:

• Senior charity finance experience.
• Strong financial management, management accounts and Board reporting experience.
• Experience reviewing or improving finance systems, processes, controls and reporting routines.
• Good working knowledge of Xero.
• Understanding of UK charity finance, trustee reporting and governance expectations.
• Experience with international charities or organisations operating across multiple countries would be helpful.
• A practical, diplomatic and collaborative approach.

The assignment is expected to involve up to 75 hours of remote support over around 3 to 4 months. The organisation expects a minimum commitment of around 4 hours per week, with the exact schedule and workplan to be agreed between the volunteer and the organisation.

This would be a good opportunity for a senior charity finance professional who enjoys helping organisations strengthen their systems, reporting and governance in a practical and supportive way.

This is an exciting opportunity for someone who wants to get involved in an impactful charity making a tangible difference to the lives of refugees here in the UK.

Our work is simple – we refurbish unwanted bikes and donate them to refugees and people seeking asylum, many living on less than £7 a day, giving them freedom and independence whilst they rebuild their lives.

A bike makes a huge difference – not only is it a practical tool for tackling poverty, those who receive bikes from us report they are more connected in their community, happier and healthier as a result:

• 91% of people use their bikes weekly for essential journeys

• 84% of people are better able to access legal and other vital support services 

• 93% report better physical and/or mental health

Alongside our core Bike Donations Programme, we support refugee women to learn to cycle through our Pedal Power Programme; provide ongoing support with bike maintenance through our Repair or Replace Programme; and offer the opportunity for connection and friendship through our volunteer-matching Bike Buddy Programme.

“The Bike Project has given me so much more than just a bicycle — it has given me confidence, independence, and a sense of belonging. Receiving a bike as a gift allowed me to feel free in society, explore my community, and even join a cycling group where I’ve met wonderful people. 

Thank you again for everything you do. Your work changes lives, including mine.”  
Ladan, Bike Recipient 

About You and the Role  

You don’t need to have experience of being on a Board, in fact the role would be ideal for someone considering taking on their first role as a trustee. We will work with you to understand your duties and support you.

You will, however, have an excellent understanding of charity finance and understand the unique set of challenges charities of our size face in delivering impact and ensuring financial resilience. You will be an excellent communicator – able to provide constructive feedback and scrutiny at the same time as helping the team to articulate financial information to others who may not have a finance background.
 
You will be joining a highly committed group of trustees who give their time, expertise and contacts to support the charity. Our trustees are critical in enabling us to thrive and this role plays a key role in supporting the wider board to fulfil its financial responsibilities.

You will work together with the board and wider staff team to set our strategic direction and improve our work with refugees. At the heart of everything we do is the real and immediate impact a bike makes to the lives of those who have been through so much. You will be part of us achieving that.
 
The time commitment for a trustee generally totals approximately 8 hours per month. Please see the role description for further details.

We particularly encourage applications from people with lived experience of the asylum process, women, people of colour / people of the global majority, and people with disabilities.  

Application Process 

Deadline for Applications: Friday 28th August 2026

Interviews: Late September - Early October 2026

Appointment: October 2026
 
Feedback will be provided to all applicants whether taken to interview or not.

For an informal conversation about the role, please contact hradmin [at] thebikeproject [dot] co [dot] uk.

Treasurer & Finance Lead (Trustee)

• Role Type: Trustee / Finance
• Time Commitment: 3–4 hours per month (Remote/Flexible)
• Salary: Volunteer (Reimbursed expenses)

About Us:
MINDSET Charity is a brand-new, grassroots, volunteer-led charity based in Ealing, West London. Our mission is to support the mental wellbeing, emotional resilience, and personal growth of local men and boys. Through positive role models, structured mentoring, and growth-mindset coaching, we aim to build a stronger, more supportive community from the ground up.

The Role:
Trust is our currency, and clear financial governance is vital for our survival. We are looking for a Treasurer to join our founding board. You will oversee our financial health, help us set up our community bank account, and ensure we remain fully compliant as we secure our first local grants.

Key Responsibilities:

• Manage the charity's basic bookkeeping and dual-signatory bank account.
• Present simple financial updates at our monthly committee meetings.
• Assist the Charity Manager with budget planning for grant applications (e.g., Ealing Council, National Lottery).
• Prepare the annual financial statement for the committee.

What We Are Looking For:

• A background in accounting, bookkeeping, or financial management.
• Familiarity with spreadsheet tools (Excel/Google Sheets).
• An eye for detail and a commitment to transparency.

We are excited to recieve your completed application, which should include;

1. Your up-to-date CV
2. Cover Letter, stating why you wish to volunteer with us at MINDSET and what you would bring to this volunteer role and to our new start-up charity.

Behçet’s Disease is an auto-immune disorder which is incurable but can be managed by specialist consultants. It is very rare and can affect any part of the body. It often takes years to diagnose and can be debilitating to the patient. 

Behçet’s Patients Centres (BPC), a charitable company, was formed in 2011 to provide the specialist, multi disciplinary care for patients.

We are seeking to recruit a Director to our Board in order to both increase our experience and skills base and to facilitate effective succession management. This is a volunteer role that offers rewarding experience and the chance to make a difference in the lives of those who are affected by this rare condition.

This is a highly autonomous role that will make a big difference to the Board of Directors and their purpose to provide a service to one of the rarest patient groups in England. We’re looking for someone who can come in and help us build on our achievements and do things even better. You will play an important role as a member of the Board of Directors, ensuring they are guided by your expertise.  We also work collaboratively with Behçet’s UK, the registered charity for patients with Behçet’s Disease and you’ll be building relationships with that charity. 

The time commitment for this role is around 2 to 3 days per month on average, with extra time needed around budgeting and year end accounts. 

Experience Required:

• Proven management and leadership skills
• Proven communication skills
• Awareness of both Charity and Data Protection Law
• Computer literate in use of Microsoft products
• Experience of contract performance management
• Flexibility of working hours to attend quarterly Director meetings and the Behçet’s UK Annual Conference

Qualifications Required:

• Educated to degree level or equivalent experience. 
• A UK driving licence and the ability to travel 
• A clean Disclosure & Barring Services check will be undertaken 

Remote Volunteer Technical Support Role 

Job description 

This is a volunteer role (approx. 4 hours per week) based remotely. The Volunteer Technical Support is responsible for the oversight of the NGO’s digital infrastructure, maintaining security protocols, and responding to critical technical emergencies. They will report directly to the CEO and work to formalize IT procedures to ensure long-term organizational continuity. This role is a fixed one-year term and includes a one-month handover period for their successor. 

Role specification 

Infrastructure and Security Management: 

• Act as the primary administrator for the Microsoft 365 environment

• Perform regular security audits to manage permissions, remove dormant accounts, and ensure the principle of "least privilege" across the team. 

• Help with offboarding protocol to ensure all digital keys and account ownership are transferred back to the NGO when staff or volunteers depart. 

• Consult with the team to ensure all technical systems adhere to organizational safeguarding policies, specifically regarding data privacy and the protection of member information. 

• Maintain a secure digital environment for staff and members by identifying operational risks and reporting potential vulnerabilities or breaches immediately to the CEO. 

Critical Support and Strategy: 

• Act as the on-call point of contact for critical system failures (e.g., total email loss, or security breaches). 

• Utilize a structured ticketing or request system to streamline technical support

• Advise the CEO on technical "vetting" and trust markers for future IT volunteers to safeguard the organization’s power and data. 

Knowledge Transfer and Communication: 

• Act as a technical mentor to the staff, explaining the logic behind security policies (the "why") rather than just issuing instructions. 

• Help foster an empathetic security culture where technical guardrails are seen as tools for mission success rather than roadblocks. 

• Lead a 1-month handover period at the end of the term to train the incoming volunteer, ensuring a seamless transition of power and knowledge. 

About Career Compass

Career Compass is a UK social mobility charity that helps sixth-form students from underrepresented backgrounds access professional careers. We connect young people with employers through work experience, mentoring, employer insight events, employability workshops and careers advice.

Since launching, we have supported over 12,500 students from more than 500 schools across the UK, helping them build confidence, develop employability skills and access opportunities they may not otherwise have.

The Opportunity

We’re looking for a creative and proactive Volunteer Social Media Manager to help grow our Instagram presence and engage more sixth-form students with the free opportunities we offer.

This is an exciting opportunity for someone with previous experience managing Instagram accounts who wants to use their skills to make a genuine social impact. You’ll play a key role in increasing our reach, inspiring young people and helping more students access life-changing career opportunities.

What You’ll Do

• Plan and schedule engaging Instagram content.
• Create and publish posts, reels, stories and carousels.
• Grow our Instagram following and increase student engagement.
• Develop content that resonates with sixth-form students (16-18-year-olds).
• Promote work experience, mentoring, employer events and career resources.
• Monitor performance and recommend ideas to improve reach and engagement.
• Keep up to date with Instagram trends and suggest new content ideas.
• Work closely with the Career Compass team to ensure content aligns with our mission and campaigns.

We’re Looking For Someone Who Has

• Previous experience managing Instagram accounts (charity, business or personal brand).
• Strong understanding of Instagram trends, engagement strategies and best practice.
• Experience creating engaging social media content using tools such as Canva or similar.
• Excellent written communication skills.
• Creativity, initiative and the ability to work independently.
• A passion for education, social mobility or supporting young people.

Time Commitment

• Approximately 1-2 hours per week.
• Fully remote.
• Flexible working around your schedule.

What You’ll Gain

• The opportunity to make a measurable difference to the lives of young people.
• Experience working with a growing national charity.
• Freedom to shape and develop our Instagram strategy.
• A professional reference upon successful completion of your volunteering.
• The chance to work alongside a passionate team committed to improving social mobility across the UK.

Why Volunteer With Us?

Every post you create has the potential to help a young person discover a career they never thought possible.

By helping Career Compass reach more students, you’ll play a direct role in widening access to professional careers and creating opportunities for thousands of young people across the UK.

If you’re passionate about social media and want to use your skills for good, we’d love to hear from you.

Our partner is an established international development organisation seeking an experienced finance professional to undertake a short, independent process review relating to the financial management of a large donor-funded programme.

The assignment relates to a complex grant management issue involving the treatment and interpretation of foreign exchange gains and losses, donor policy requirements, partner payments, internal decision-making and communications. The situation has involved a number of finance, programme, donor and partner considerations, and the organisation is seeking an external professional who can help establish a clear, balanced and factual account of what happened.

The purpose is to support transparency, shared understanding and organisational learning, and to identify practical recommendations that could strengthen future grant management, documentation, financial decision-making and communication between teams.

Scope of support

The volunteer will be asked to:

• Review relevant grant documentation, donor correspondence, internal communications, financial records and policy guidance relating to the issue.
• Understand the organisation’s approach to calculating, recording and managing foreign exchange gains and losses within the grant.
• Review the sequence of internal and donor-facing communications, including key decision points and financial implications.
• Conduct remote conversations with approximately 4–5 key staff members involved in the process.
• Identify any areas where interpretation, documentation, process, communication or escalation could have been clearer.
• Prepare a concise written note or report setting out the chronology, observations, learning points and practical recommendations.
• Maintain a sensitive, balanced and non-judgemental approach throughout, recognising the complexity of the issue and the range of stakeholders involved.

Volunteer Profile

This assignment would suit a senior professional with experience in international NGO finance, donor grant management and financial controls. The ideal volunteer will bring:

• Strong experience of complex donor-funded programmes, including restricted funding, donor compliance, grant financial management and partner payment arrangements.
• Ability to interpret financial information, donor requirements and organisational policies clearly and objectively.
• Experience reviewing financial processes, internal controls or grant management issues.
• Strong written communication skills, with the ability to produce a concise, balanced and practical report.
• A calm, thoughtful and sensitive approach, particularly where issues have involved internal tension or differing interpretations.

Time commitment

The assignment can be delivered entirely remotely. The anticipated commitment is up to 30 hours in total, ideally over a period of approximately 4–6 weeks. A commitment of around 5 hours per week would be helpful, although there is some flexibility depending on the volunteer’s availability and the agreed approach. They are seeking for the bulk of the work to be compelted in July - August. 

Our partner is a small faith-based organisation supporting indigenous communities in Central America through integrated health, education and community care programmes.

The organisation has grown around a committed local team and is now reviewing how its finance and operations functions should be structured for the next stage of development. It currently has a Finance Manager who also holds some operational responsibilities.

The Executive Director is seeking support from an experienced finance professional to offer an external perspective on how finance and operations responsibilities could be organised in a way that protects financial controls, supports staff development, and enables the Executive Director to focus more time on fundraising and organisational leadership.

Key areas of support

• Review current finance and operations responsibilities, including how tasks are currently split across finance, administration, purchasing, inventory and related operational processes.
• Consider possible organisational structure options for the finance and operations functions, including whether the Finance Manager’s role could evolve into a more strategic finance and systems position, and whether a separate operations-focused role may be needed to take on non-finance operational responsibilities.
• Review how additional accounting or finance responsibilities could be delegated safely within the team, identifying the internal controls, reporting lines and role clarity needed under different structure options.
• Provide practical recommendations on structure, controls, staffing options and job description content where useful.

Volunteer Profile

This assignment would suit a senior finance professional with experience in:

• Small or growing non-profits, finance operations, internal controls and organisational structure.
• Managing finance teams and supporting operational change
• Working with organisations in Latin America would be helpful, and Spanish language skills would be beneficial, but are not essential.

The ideal volunteer will bring a practical, sensitive and collaborative approach, with the ability to support a small leadership team to think clearly through structure, controls and capacity before making changes.

Time commitment
The assignment can be delivered entirely remotely. The anticipated commitment is up to 15 hours in total, ideally over a period of approximately 4–6 weeks, with the hope that the bulk of the work can be completed in July.

Our partner is a national civil society network in Central America that supports and strengthens non-profit, community-based and civil society organisations. Its work focuses on institutional strengthening, governance, legal reform, member engagement, and building a more resilient and coordinated civil society sector.

The organisation is seeking remote finance support to strengthen its financial management systems and improve the way financial information supports decision-making, donor reporting and future planning. It currently uses QuickBooks and would value an experienced finance professional to review the current setup, identify areas for improvement, and provide practical recommendations that support stronger reporting, compliance and audit readiness. Alongside this, the organisation would like support to think through financial sustainability.

Key areas of support

• Review the current QuickBooks setup, including the chart of accounts, class or project tracking, donor reporting setup and financial workflows.
• Identify gaps, risks or inefficiencies in the current financial management and reporting processes.
• Provide practical recommendations to strengthen accounting practices, compliance, audit readiness and management reporting.
• Review the organisation’s current funding model and sources of income.
• Support the organisation to understand financial risks and consider possible income diversification opportunities.
• Help test sustainability ideas led by the organisation, adding financial assumptions, costs, risks and practical next steps.
• Support improved use of financial information for planning, Board discussion and decision-making.

Volunteer Profile

This assignment would suit a finance professional with:

• Experience in non-profit accounting systems, QuickBooks, donor reporting, financial controls and management reporting.
• Experience supporting small civil society organisations, membership networks, non-profit governance, or financial sustainability discussions would be particularly helpful.

The ideal volunteer will be practical and collaborative, able to provide clear recommendations while recognising that fundraising strategy and resource mobilisation ideas need to be shaped by the organisation’s own context, relationships and priorities.

Time Commitment
The assignment can be delivered entirely remotely. The anticipated commitment is approximately 30 hours in total, ideally over a period of 2–3 months. A commitment of around 2–3 hours per week would be helpful, allowing time for the QuickBooks review, discussions with leadership and Board members, and financial sustainability support in a way that is manageable for both the organisation and the volunteer.

We are looking for a fundraising expert to join our external Finance Committee. In particular we’re looking for someone who can interrogate plans and performance, with experience of the marketplace and the need for fundraising investment. The ideal candidate will have a background in fundraising and developing income generation strategies but also a passion for innovation, insight and above all ‘best in class’ supporter care.

The Finance Committee is responsible for monitoring the financial performance of the full portfolio for the organisation. It plays a key role in protecting the financial health and sustainability of Samaritans and our vision that fewer people die by suicide. The Committee is a formal advisory committee of the Board of Trustees and reports on its work, conclusions and recommendations to the Board on a regular basis.

We are seeking applicants who will provide independent and effective advice to help the committee fulfil its responsibilities in:

• Monitoring and reviewing budgets, accounts and financial performance and making recommendations in response to identified areas of risk;
• Monitoring and reviewing fundraising plans, investments and ongoing performance and making recommendations;
• Assessing the investment and reserves policies for the organisation and reviewing performance.

Applicants for this role should have experience of senior fundraising roles.

About the role

Term: Committee members are usually appointed for a period of three years, with the possibility of a second three-year term.

Location: The role is home-based and may involve some travel within the UK. As a minimum, attendance is required at four committee meetings, either in person or online.

Remuneration: The role is voluntary.

Application process: Applicants are to return a copy of your CV with a completed application form by Monday 17 August containing a personal statement how you meet the experience, knowledge and skills set out in the role description. Shortlisted applicants will be invited to interviewonline w/c 24 or 31 August.

About Samaritans

Our vision is that fewer people die by suicide.  Samaritans is the charity that prevents suicide through the power of human connection. We provide compassionate listening services to people in emotional crisis, 24/7. We combine evidence with lived experience to influence decision makers to tackle the underlying causes of suicide. We change attitudes and encourage people struggling with suicidal thoughts to seek support.

Together we can prevent suicide today. Because tomorrow’s too late.

The BDFA is seeking a new Volunteer Treasurer/Trustee to join our passionate and dedicated Board.

URGENTLY REQUIRED

As a trustee, you will play a key role in shaping the strategic direction of the BDFA, ensuring strong governance, and helping to improve the lives of children, young people, and families affected by Batten disease across the UK.

The overall role of Treasurer is to maintain an overview of the organisation’s affairs, ensure its financial viability and ensure that proper financial records and procedures are maintained.

As our Treasurer, you will:

• Oversee, approve and present budgets, accounts and financial statements
• Assure that the financial resources of the organisation meet its present and future needs
• Prepare and present financial reports to the Board
• Ensure that appropriate accounting procedures and controls are in place
• Have oversight of and give guidance to BDFA Accounting & Financial Administration Officer
• Attend board meetings
• Present financial overview at the AGM

Ideal Background:

Fully qualified chartered accountant/financial qualifications and experience. Some experience of charity finance and fundraising.

We welcome suitably qualified applicants who share our commitment to inclusion, integrity, and advocacy, and who are willing to contribute their time, skills, and experience to drive meaningful change.

Trustees meet regularly (virtually and occasionally in person) and contribute to board discussions, sub-committees, and strategic projects, including attending our in person meeting once a year.

This is a voluntary role, but the personal and social impact is immeasurable.

URGENTLY REQUIRED

About us

Batten disease is a very rare genetic disorder that affects the brain and nervous system. Symptoms sometimes begin in infancy and sometimes later in childhood, after apparently normal early development. Occasionally it may start in adulthood. In individuals suffering from Batten disease, nervous system function steadily declines, causing a wide variety of neurologic problems, including loss of vision and seizures. The life expectancy of a child born with Batten disease can vary, depending on the form of the disease and the age of onset. Some children die in early childhood, while others may be able to live into their teens or twenties.

The BDFA was registered as a charity in 2001 and our mission is “to enable children and adults who are affected by Batten disease to live life to the full and to provide families with the care and support they need so that they do not walk this path alone.” The BDFA offers informed guidance and support to families and the professionals who work with them, as well as actively raising awareness, and promoting research into the management of Batten disease to improve patient care pathways and ultimately find a cure.

Work Location: Remote