Charity trustee volunteer roles in aberystwyth, dyfed

Shape the future of character education

Are you a Headteacher, Deputy Headteacher, or senior school leader passionate about developing young people’s character? Do you want to use your expertise to shape an innovative education charity while also benefiting your own school? If so, we invite you to join Being The Cure as our Education Trustee and play a key role in refining and expanding our impact in schools.

About us

At Being The Cure, we believe education should go beyond academics—it should build Kindness, Honesty, and Humility, empowering young people to become tomorrow’s heroes. Our Saturday Schools and in-school programmes are grounded in research and gaining attention, including interest from UCL. Now, we need an experienced school leader to help us ensure our programmes truly meet schools' needs.

Why this role could be right for you

�� Flexible & realistic commitment – We understand school leaders are busy! Meetings are designed to fit around your schedule, with remote options available and minimal paperwork.

�� Directly benefit your own school – Gain expert insights into character education to enhance your curriculum and explore opportunities for your school to pilot our programmes or receive support.

�� Have strategic influence – This is more than a governance role. You will directly shape our education programmes, ensuring they are relevant, impactful, and aligned with the realities of school life.

�� Join a diverse & supportive board – Work alongside charity sector leaders, school business managers, and corporate consultants, all driven by a shared commitment to education and social impact.

Your role as our Education Trustee

As a trustee, you will act as a critical friend to our CEO and education team, helping us refine our curriculum and engagement with schools. Specifically, you will:

✅ Challenge and support our CEO to ensure our curriculum is evidence-informed and aligned with school needs.

✅ Help shape our engagement strategy, making it easier for schools to access and benefit from our programmes.

✅ Advise on best practices in education and share insights from your leadership experience.

✅ Support the scaling of our impact, ensuring our growth is sustainable and beneficial for schools.

Time commitment & flexibility

We respect the demanding schedules of school leaders, so we structure our commitments with maximum flexibility:

�� Induction – Approx. 6 hours to familiarise yourself with our programme and approach.

�� Ongoing - 6 hours on a quarterly basis including:

Quarterly Education & Safeguarding Committee – 1-hour remote meeting, with up to 1 hour of prep.

Quarterly Full Board Meeting – 2-hour in-person meeting (ideally, but remote options available), with up to 2 hours of prep. We encourage in-person attendance as we socialise as a board afterward, but we fully understand when this isn’t possible.

�� Additional support – As available, based on your interest and capacity.

What we’re looking for:

✔ Experience in school leadership, with a strong understanding of how schools operate.

✔ Teaching experience, ideally recent, to ensure familiarity with classroom realities.

✔ Commitment to our mission of empowering young people through character education.

➕ We'd love it if you also had knowledge of or experience with schools in Newham and it's neighbouring boroughs, Bedford, or Luton.

Next steps

We know committing to a trustee role is a big decision and we’re happy to have an informal chat about the role, answer any questions. After we've had a chat we'll also be happy to invite you to visit one of our schools to see our impact firsthand.

We're looking for 2-3 detail-oriented and strategic Search Engine Optimisation (SEO) Specialist Volunteers to help optimise our online presence and ensure our campaigns and content reach the communities that need them most and increase the charity’s search engine results rankings. The SEO Specialist Volunteers will play a key role in enhancing the visibility and searchability of Burning Nights CRPS Support’s website and digital content.

The SEO Specialist Volunteers will be volunteering within the Communications & Marketing Team to implement SEO best practices, conduct keyword research, improve site structure, and analyse web performance – all to ensure our content reaches a broader audience and amplifies the voice of our charity’s supporters online.

Key Tasks and Objectives

• Competitor and Keyword Research: Conduct keyword research to inform website content and campaign strategies.
• On-page optimisation: Optimise existing content for improved search engine ranking (meta tags, meta descriptions, headers, alt text, etc.)
• Monitor and analyse SEO performance using tools such as Google Analytics, Google Search Console, and SEMrush.
• Technical SEO Implementation: Identify technical SEO issues and collaborate with content teams to resolve them.
• Backlink and Off-Page SEO: Assist in developing backlink strategies and improving domain authority.
• Support the content team in creating SEO-optimised articles and pages.
• Provide monthly reports on SEO performance and suggest improvements.
• Stay up to date with SEO trends, Google algorithm updates, and emerging best practices.

Key Skills or Qualifications

• Excellent understanding of SEO principles and search engine algorithms.
• Proven experience in conducting SEO audits, strategy development, and implementation.
• Experience using SEO tools such as Google Search Console, Google Analytics, Ahrefs, or SEMrush or similar platforms.
• Previous experience in digital marketing, content strategy, or technical SEO.
• Ability to perform keyword research and competitor analysis.
• Familiarity with HTML, CSS, and content management systems (ideally Django framework).
• Strong analytical skills and attention to detail.
• Excellent written communication and reporting skills.
• Evidence of organisational skills, with good attention to detail.
• The ability to work independently, turning recommendations into action without needing constant oversight.
• A passion for using your skills to support patients and families impacted by a debilitating pain condition and help save lives.
• Passion for creating inclusive and accessible digital spaces.
• Highly organised, self-motivated, and able to work independently.
• Enthusiastic about supporting a small charity.
• Willing to learn, adapt, and collaborate with a supportive team.

Desirable Experience

• Experience of Google Ads for nonprofits.
• Experience of using Django framework websites.
• Familiarity with accessibility best practices and inclusive web design.
• Experience working with or volunteering for nonprofit / charitable organisations.
• Demonstrable IT skills, particularly Google Drive and Microsoft.
• Good research and information management skills.
• An understanding of the charity sector and/or fundraising.

Key Benefits

• Volunteer as part of a forward-thinking, supportive team.
• Unique opportunity to directly contribute to strategic SEO recommendations, and the implementation of those changes to increase the charity’s visibility.
• At Burning Nights CRPS Support you’ll use your SEO skills for a mission with a real, measurable impact. This is more than just a volunteer role, it’s an opportunity to change and save lives.
• Make a meaningful difference in the lives of patients and families impacted by a severe pain condition.
• Building your network and forming connections with like-minded people and organisations.
• Enhance your CV and gain skills that are transferable to a variety of career paths.
• Receive training and ongoing support from our team.
• Experience the personal satisfaction and fulfilment that comes from helping others.

Training and Support

• Full induction to our organisation, as well as check-ins, ongoing training, supervision and support from the Communications & Marketing Lead Volunteer, Volunteer Co-ordinators, Trustees and the Volunteer Team.
• This a remote volunteering opportunity with regular online team check-ins and collaborative sessions with a supportive, creative, and inclusive team environment.
• Relevant and ongoing training for your volunteer role.
• Regular updates on charity activities.
• Support, advice and guidance from Charity team.
• After 3 months volunteering, all volunteers are eligible for additional training courses (reasonable cost).
• Out-of-pocket expenses, approved in advance will be reimbursed.

Are you passionate about supporting and managing volunteers in a small charity? Our Volunteer Coordinators will recruit, support & develop a team of volunteers, to enhance our work supporting people impacted by a chronic pain condition

What will you be doing?

We are looking for 3 volunteer coordinators to join the coordinators team who will volunteer to support our volunteers in various roles. The volunteer coordinators will 

• Help to assess organisational and programme needs to determine number and range of volunteers needed for particular projects
• Help to recruit, and assure the adequate training of suitable, reliable volunteers
• Co-ordinate the volunteers to ensure that there is always someone available to support all our services 
• Help to create and distribute information regarding volunteer policies and procedures
• Monitor volunteers during their appointments to retain or replace candidates
• Meet and check-in with volunteers regularly to assess their progress and satisfaction, as well as to conduct evaluations or skills audits
• Help to induct new volunteers
• Maintain regular communication among volunteers and between an organisation and its volunteers, in order to share news, progress, and available positions
• Maintains a database of volunteers and projects and track metrics
• Help to promote the charity and its volunteer accomplishments 
• Set up and arrange any relevant training required for volunteers

What are we looking for?

The Volunteer Co-ordinators role requires proactive and detail orientated individuals with an organised approach and an interest in supporting small charities. They will have good communication skills. The Volunteer Co-ordinators are responsible for the volunteer aspects of Burning Nights CRPS Support to ensure the smooth running of the charity’s services and ensuring that the volunteers are used optimally.

Our Volunteer Co-ordinators are also responsible for ensuring that suitable volunteers have DBS checks where needed and they are adequately trained to do their role working with our Charity Administrator.

Essential

• Experience in volunteering or HR and recruitment
• Managing and supporting volunteers
• Time manage effectively
• Supporting and advising others on policies and procedures
• Ability to motivate and encourage
• Working knowledge of databases
• Excellent communication and interpersonal skills
• Excellent organisation and team building skills

Desirable

• Facilitation and/or training skills
• Personal experience of volunteering

What difference will you make?

You most likely will not have heard of Complex Regional Pain Syndrome (CRPS), and you wouldn’t be alone in this! But we see and know first hand the impact it has on those living with it and on those caring for someone with the condition. We know the huge challenges they face even with simply getting a correct diagnosis, let alone the appropriate treatment and relevant support. 

You will join the charity during a challenging period and your expert knowledge and experience will be invaluable to our success. You will have a key role in ensuring we can maintain our support services and become a sustainable charity to allow us to fulfil our aims. 

What's in it for the volunteer?

This role is a fantastic opportunity to volunteer with a small but ambitious charity, developing and honing your skills.

You could gain experience in the charity sector, a broader C.V, or a sense of accomplishment from using your skills to help people affected by a very painful condition.

You would be a part of our small, friendly, forward-thinking charity team, focused on reaching people who may not have heard about the charity or the condition. You would have a key role in developing a volunteering team. This is a fantastic opportunity for you to make a real difference to a rare condition.

A few more details

If you don't have the exact experience, but are interested to volunteer with us, please apply! We would be thrilled to find out about how your interests and experience match with our needs or what we are doing. 

This role is done remotely using Zoom, phone and email. You would be working closely with the volunteers and trustees. However we would have regular updates and remote meetings with the Chair and/or Trustees.

We have an induction process to help successful applicant to understand how our Charity operates.

Purpose of the Role:
The Treasurer plays a key leadership role in ensuring SAPHNA’s financial integrity and sustainability. In addition to the responsibilities of a General Trustee, the Treasurer provides strategic guidance and oversight on SAPHNA’s financial matters.

Key Responsibilities:

• Oversee SAPHNA’s financial management, ensuring robust processes and controls are in place.
• Advise the Board on financial strategy, risk management, and resource allocation.
• Work closely with SAPHNA’s management team to monitor budgets, cash flow, and financial performance.
• Ensure the preparation of annual accounts in accordance with charity regulations.
• Present financial reports to the Board in a clear and accessible format.
• Support the development of financial policies and procedures.
• Ensure SAPHNA’s funds are invested appropriately, achieving both security and growth.
• Oversee financial compliance with legal and regulatory obligations.

Person Specification:

• Must have proven financial expertise, with experience in UK financial management, accountancy, or charity finance.
• Strong analytical skills and the ability to present complex financial information clearly.
• Commitment to SAPHNA’s mission, vision, and values.
• Experience in governance, leadership, or financial oversight.
• Ability to collaborate effectively with other Trustees and SAPHNA’s management team.

Time Commitment:
Trustees are required to attend quarterly Board meetings, participation in working groups or committees, and occasional representation of SAPHNA at events. The Treasurer role may require additional time to review financial matters and liaise with staff.

This is an exciting opportunity to join a charity at the very start and to make a difference in shaping how we move forward.

Who are we looking for?

At present we are working towards being fully operational, over the next year Living Reasons will be looking to expand its reach and part of that journey is to work with the trustees and the team to create campaigns that are relevant to the charity values, aims, goals and purpose in an engaging way.

The role of Campaigns Co-ordinator will focus on creating campaigns to raise awareness, income and engagement with our supporters, donors and people who engage with the charity.

This role will be key in ensuring that the message of the charity operations is translated to a wide audience, while also aligning with the ethos and charity objectives.

In this role you will work with all other teams in the charity, including funding, research, live experience and social media and communications, to establish, develop and create on brand campaigns.

Living Reasons feels that experience is not as important as passion, drive and creativity, we like to do things differently, so if you feel you could create engaging, far reaching campaigns that speak to wide audiences, please get in touch with us about this role, regardless of experience, we want our volunteers to grow and develop alongside the organisation.

What is the plan?

The person who is starting the charity up is autistic, has ADHD, CPTSD and also multiple physical conditions that effect daily life and is part of the LGBTQ+ community and has faced a lot of issues in life because of these things.

Living Reasons is being created to fix what we think is a challenging situation that is getting harder to achieve every week, month and year in the current economic, political, environmental and societal landscape. It is not easily defined but we hope the charity objects below will help put context to what we want to achieve, what we can say is that below are the issues we are trying to address, how we do this will change as quickly as society does, but the issues we want to tackle are these:

1) Outdated and damaging employment practices

2) Accessibility to services

3) Limited employment, training and education opportunities

4) Lack of support during times of crisis or need

5) Lack of equity and agency for many people in society

6) Institutional discrimination that is not challenged

7) Abuse of the legal system at all levels

8) Abuse of power in government bodies

9) Poor access to healthcare

10)  Unequal treatment of many people in society by large corporations

11)  Assumptions made by wider society based on incorrect, outdated or discriminatory rhetoric that is used in daily life

12)  Outdated company engagement with the public

13)  Lack of support that is not talked about and not being addressed

Our Living Values -

Creativity

1) Imaginative Development (Individual)

2) Instilled Collaboration (Internal)

3) Changing The Status Quo (External)

Prospectivity

1) What Can You Do (Individual)

2) What Can We Do (Internal)

3) What Can They Do (External)

Revolutionary 

1) Inspire With Confidence (Individual)

2) Boundaryless Innovation (Internal)

3) Challenge Traditions (External)

Attentivity

1) Analyse and Redesign (Individual)

2) Rebel and Reform (Internal)

3) Enquire and Reimagine (External)

We are a small but growing charity with a mission to minimise risk of Lyme disease by educating the public and health professionals about ticks and Lyme disease. We now require skilled help to evolve our communications.

• Oversee LRC communications messaging, strategy

• Develop, co-ordinate key messaging across platform

• Ensure key messaging is woven in to LRC presentations, materials

• Liaison with media - respond and proactive

• Coordinate planning of newsletter

• Liaising with team members, project leaders, Trustees

• Taking part in relevant meeting

Key competencies 

• Communications experience

• Media experience 

• IT competent

• Social media awareness

• Team working

• Good intuition, initiative

• Good communication – verbal & written

• Attention to detail

This is an exciting opportunity to join a charity at the very start and to make a difference in shaping how we move forward.

Who are we looking for?

At present we are working to secure funding that will see us through our first year, and the role of the Social Media and Communications Co-ordinator will play a key role in this.

If you are well versed in social media, have experience or a passion for communicating with wide audiences across pretty much all social media platforms, this is a role for you.

Living Reasons, at the core of what we want to achieve, doesn't just value experience from employment but from personal experience and based on you as a person, everything else comes from the relationships built and trust given to each other and we want to learn from you, just as much as you will learn from us.

You will work with the volunteers and trustees to create engaging content that focuses on the current needs of the charity and in the first 3-6 months will be very much focused and 2 areas - fundraising and communicating the charity message and gaining support for the charity as we establish ourselves. We want to do things differently, so there are no boundaries other than legal requirements and ensuring we stick to the charity values, which, as you will see, are very much about making change and doing things differently.

Living Reasons – What we are planning, who we are and where we are now:

What is the plan?

The person who is starting the charity up is autistic, has ADHD, CPTSD and also multiple physical conditions that effect daily life and is part of the LGBTQ+ community and has faced a lot of issues in life because of these things.

Living Reasons is being created to fix what we think is a challenging situation that is getting harder to achieve every week, month and year in the current economic, political, environmental and societal landscape. It is not easily defined but we hope the charity objects below will help put context to what we want to achieve, what we can say is that below are the issues we are trying to address, how we do this will change as quickly as society does, but the issues we want to tackle are these:

1) Outdated and damaging employment practices

2) Accessibility to services

3) Limited employment, training and education opportunities

4) Lack of support during times of crisis or need

5) Lack of equity and agency for many people in society

6) Institutional discrimination that is not challenged

7) Abuse of the legal system at all levels

8) Abuse of power in government bodies

9) Poor access to healthcare

10)  Unequal treatment of many people in society by large corporations

11)  Assumptions made by wider society based on incorrect, outdated or discriminatory rhetoric that is used in daily life

12)  Outdated company engagement with the public

13)  Lack of support that is not talked about and not being addressed

Our Living Values -

Creativity

1) Imaginative Development (Individual)

2) Instilled Collaboration (Internal)

3) Changing The Status Quo (External)

Prospectivity

1) What Can You Do (Individual)

2) What Can We Do (Internal)

3) What Can They Do (External)

Revolutionary 

1) Inspire With Confidence (Individual)

2) Boundaryless Innovation (Internal)

3) Challenge Traditions (External)

Attentivity

1) Analyse and Redesign (Individual)

2) Rebel and Reform (Internal)

3) Enquire and Reimagine (External)

If you think you would enjoy this role, please apply, we want to hear from you!

Here at Youth4Youth, we have grown a strong, tight-knit community of individuals who are passionate about making a difference and improving the lives of young people across the UK. Our growing team of volunteers all contribute, significantly, to the impact that we have as a charity on our direct beneficiaries, regardless of the department that they work in of the level of time that they are able to commit. Our services primarily offer a peer-support network to young people right across the UK, allowing them to access a peer mentor who is of a similar age to them and somebody that they feel more comfortable speaking with.

If successful, you will be joining a growing team of diverse, but likeminded individuals, collaborating to increase the reach of the Charity and improve support provisions available to young people. All of our volunteers and employees are remote workers, but that doesn't stop us keeping in touch and maintaining a strong positive culture amongst our whole team.

About the role

This is an exciting opportunity to join the Executive Leadership Team here at Youth4Youth to drive positive change in all things volunteer engagement. As an entirely volunteer run organisation, positive engagement with volunteers is absolutely fundamental in allowing Youth4Youth to achieve its mission. It is so fundamental that one of our overarching strategic goals is to ensure that all volunteers have a positive and meaningful volunteering experience when working with us. The Volunteer Experience Director will play a critical role in setting strategy and executing solutions to improve the overall volunteer experience. 

Responsibilities 

Short term objectives:

• Define the volunteering proposition for the Charity, helping new and existing volunteers to understand the impact of working with Youth4Youth
• Manage a project to understand gaps in volunteer engagement and experience, generating recommendations back to the ELT
• Develop a volunteer experience strategy that improves engagement and the overall volunteering experience of all involved with Youth4Youth

Overall objectives and responsibilities:

• Lead a team of volunteers who are involved in supporting a positive volunteering experience with the charity
• Develop and execute a volunteer experience strategy that seeks to attract, engage and retain high-quality volunteers into all teams across the charity
• Partner effectively with the broader charity leadership team to understand engagement challenges and implement solutions to close engagement gaps
• Report to the CEO and the Board of Trustees on any strategic progress made around improving volunteer engagement

Skills 

• Ability to manage complex projects, including the direct and indirect management and coordination of people resources
• Ability to understand complex problems and articulate solutions in a clear, concise and understandable manner
• Demonstrable blue-sky thinking that encourages the implementation of new solutions that may not have been considered before
• Ability to influence both with and without authority to drive positive and meaningful change at all levels and across all departments

Our mission is to continue to grow towards becoming one of the best charities in the UK. Our aim is to do this by building a diverse team, rich with different backgrounds and perspectives. Therefore, even if you feel you only are a 75% match, we would still love to hear from you. Skills can be learned, but diversity cannot.

Benefits of volunteering with Youth4Youth

We recognise that you will be joining us and giving your time as an 'in-kind' donation, but there must be benefits for you too. When joining our team, you will be open to the following benefits:

• Professional and personal development opportunities in a variety of skill areas through volunteering in real roles. This may be general development or tailored to your specific needs or ambitions
• Becoming a member of a strong network of likeminded individuals, spread across the UK, who you can connect with and collaborate with both within and outside of the Charity
• Access to bespoke discounts, specifically designed for non-profit workers and Youth4Youth volunteers
• Opportunities to truly shape the future of the Charity, having a direct influence over the impact that Youth4Youth has on its direct beneficiaries

The hiring process

Our hiring process typically has two stages 

1. Video or Written Application (when applicable) 
2. Interview with the Volunteering Coordinator for that role

Some roles will have extra stages but we’ll let you know as early as possible if so.

Please let us know if you require any accommodations for the interview process, and we’ll do our best to assist.

Who we are

The Molly Huggins Foundation is a newly launched charity with a bold mission: to drive long-term, place-based investment in communities that are too often overlooked. We’re a subsidiary of Metropolitan Thames Valley Housing (MTVH), with a vision to raise £75 million through fundraising, partnerships, and internal contributions by 2035.

Our work centres on homelessness prevention, youth opportunity, employment support, and community capacity building. In 2025, we’ll merge with the established MTVH Migration Foundation, bringing 15 years of grant-making experience supporting migrants and refugees, into one powerful, national platform for change.

Lady Molly Huggins founded Metropolitan in 1957 to create stable homes and strong communities. Today, her name lives on in a foundation committed to profound, lasting impact, fuelled by the lived experiences of residents and delivered in collaboration with the people who know their communities best.

About the role

As our first Chair, you’ll help shape the strategic direction of this charity at a pivotal moment. You’ll lead our Board, guide the integration of two foundations, and provide high-level oversight on finance, governance, and risk. Just as crucially, you’ll act as a visible ambassador, bringing credibility, networks, and a deep belief in our mission.

This is a voluntary role with a time commitment of approximately two days per month and a three-year term (renewable up to six years). You’ll work closely with the MTVH Executive team and stakeholders across housing, social justice, and philanthropy to help unlock the potential of communities across the UK.

Who we’re looking for

We’re seeking a values-driven, strategic leader with significant board experience—ideally as Chair or senior trustee. You’ll have:

• A strong understanding of governance and charity compliance.
• Credibility and confidence to influence at senior levels across sectors.
• A commitment to tackling inequality and advancing social justice.
• Experience in strategy, financial oversight, and partnership development.
• Knowledge of housing, community development, or migration issues is welcome, as is experience in fundraising or philanthropy at scale.

We especially encourage applications from those with lived experience of social housing, migration, or community marginalisation. More than anything, we’re looking for someone with vision, integrity, and a passion for building better futures—with communities, not just for them.

Zebra is seeking a qualified accountant to join our board of trustees as our next Treasurer.

Zebra is a not-for-profit social enterprise (exempt charity) providing accommotation to postgraduate international students living in London. We believe in the importance of international studies and have been going for over 60 years. We are a healthy organisation with a strong reputation and ambitious plans for the future.

This is an important time for Zebra. We are currently going through the process of deregistering with the Regulator of Social Housing and are changing our accounting practices and systems as we make the transition away from the housing association sector and to a more appropriate structure to prepare us for growth in the future. We have an experienced Finance Manager on our staff team who you will be working with along with the CEO and the rest of the board members.

We ideally need a Treasurer with some understanding of the charity or social enterprise sector. This is an unpaid volunteer role - there are four boars meetings per year (all online), Audit and Risk Committee meeetings (also online), and occasional meet ups in London - but you can be based anywhere to carry out this role.

Duties

• Acting as a mentor to the Finance Manager, supporting her through this period of transition while Zebra puts in place a new structure and new financial systems

• Chairing the Audit and Risk Committee - number of meetings per year to be decided as this is currently under review

• Meeting with our external auditors on Zoom

• Reviewing our quarterly accounts, annual accounts and reports and providing feedback

• Using your expertise to provide advice and support to other board members, including our Co-Chairs, to support them in understanding our finances and helping them to be able to provide good scrutiny and governance

• Attendance of four board meetings per year on Zoom, where you will provide input and opinions especially around financial matters

• Attending one Board Strategy day per year in London for which expenses can be paid (and ideally also attending our Christmas meal)

• The Treasurer should expect to serve for a minimum of 12 months

To apply please submit your CV in the first instance.

Lived Experience Board Member (Advisory Role)

About the Role
At Living Reasons, we believe that real change comes from lived experience. To make sure everything we do is relevant, effective, and grounded in the realities of people’s lives, we are creating a Lived Experience Advisory Board.

This is a non-executive, advisory role. Board members do not carry trustee responsibilities but instead play a vital part in shaping and guiding the organisation. The insights and perspectives of our board members will directly inform the decisions of our trustees, helping us stay focused on what truly matters to the people we support.

How the Board Works

• The board is made up of different lived experience groups, each focusing on particular areas.

• Members can meet in their groups to share experiences, support one another, and identify key issues.

• Groups can also set up their own sub-groups where needed.

• Each group decides what information it wants to share with Living Reasons — members are always in control of their voice.

• From time to time, the full board meets together to discuss wider themes, shared experiences, and how these can guide the direction of Living Reasons.

What You’ll Do

• Share your lived experience in a safe, respectful group setting.

• Take part in discussions, focus groups, and community support activities.

• Contribute to shaping campaigns, policies, and services.

• Review materials, research, and proposals and give feedback to help the organisation grow.

• Be part of a supportive community that uses lived experience to drive meaningful change.

Who We’re Looking For

• People with lived experience of wheel chair use, either:

  • through your own personal experience, or

  • as a supporter, caregiver, guardian, or family member.

We will keep these as two separate groups (personal experience, and supporter/caregiver) so that conversations can be open and relevant to each perspective.

Why Join?

• Your experience will drive real change — in Living Reasons and in wider society.

• You’ll be part of a community where lived experience is valued, respected, and heard.

• You’ll have a direct line to trustees and a say in how resources, campaigns, and priorities are shaped.

What is the plan?

The person who is starting the charity up is autistic, has ADHD, CPTSD and also multiple physical conditions that effect daily life and is part of the LGBTQ+ community and has faced a lot of issues in life because of these things.

Living Reasons is being created to fix what we think is a challenging situation that is getting harder to achieve every week, month and year in the current economic, political, environmental and societal landscape. It is not easily defined but we hope the charity objects below will help put context to what we want to achieve, what we can say is that below are the issues we are trying to address, how we do this will change as quickly as society does, but the issues we want to tackle are these:

1) Outdated and damaging employment practices

2) Accessibility to services

3) Limited employment, training and education opportunities

4) Lack of support during times of crisis or need

5) Lack of equity and agency for many people in society

6) Institutional discrimination that is not challenged

7) Abuse of the legal system at all levels

8) Abuse of power in government bodies

9) Poor access to healthcare

10)  Unequal treatment of many people in society by large corporations

11)  Assumptions made by wider society based on incorrect, outdated or discriminatory rhetoric that is used in daily life

12)  Outdated company engagement with the public

13)  Lack of support that is not talked about and not being addressed

Our Living Values -

Creativity

1) Imaginative Development (Individual)

2) Instilled Collaboration (Internal)

3) Changing The Status Quo (External)

Prospectivity

1) What Can You Do (Individual)

2) What Can We Do (Internal)

3) What Can They Do (External)

Revolutionary 

1) Inspire With Confidence (Individual)

2) Boundaryless Innovation (Internal)

3) Challenge Traditions (External)

Attentivity

1) Analyse and Redesign (Individual)

2) Rebel and Reform (Internal)

3) Enquire and Reimagine (External)

Lived Experience Board Member (Advisory Role)

About the Role
At Living Reasons, we believe that real change comes from lived experience. To make sure everything we do is relevant, effective, and grounded in the realities of people’s lives, we are creating a Lived Experience Advisory Board.

This is a non-executive, advisory role. Board members do not carry trustee responsibilities but instead play a vital part in shaping and guiding the organisation. The insights and perspectives of our board members will directly inform the decisions of our trustees, helping us stay focused on what truly matters to the people we support.

How the Board Works

• The board is made up of different lived experience groups, each focusing on particular areas.

• Members can meet in their groups to share experiences, support one another, and identify key issues.

• Groups can also set up their own sub-groups where needed.

• Each group decides what information it wants to share with Living Reasons — members are always in control of their voice.

• From time to time, the full board meets together to discuss wider themes, shared experiences, and how these can guide the direction of Living Reasons.

What You’ll Do

• Share your lived experience in a safe, respectful group setting.

• Take part in discussions, focus groups, and community support activities.

• Contribute to shaping campaigns, policies, and services.

• Review materials, research, and proposals and give feedback to help the organisation grow.

• Be part of a supportive community that uses lived experience to drive meaningful change.

Who We’re Looking For

• People with lived experience of chronic pain conditions, either:
   

  • through your own personal experience, or
     

  • as a supporter, caregiver, guardian, or family member.
     

We will keep these as two separate groups (personal experience, and supporter/caregiver) so that conversations can be open and relevant to each perspective.

Why Join?

• Your experience will drive real change — in Living Reasons and in wider society.

• You’ll be part of a community where lived experience is valued, respected, and heard.#

• You’ll have a direct line to trustees and a say in how resources, campaigns, and priorities are shaped.

What is the plan?

The person who is starting the charity up is autistic, has ADHD, CPTSD and also multiple physical conditions that effect daily life and is part of the LGBTQ+ community and has faced a lot of issues in life because of these things.

Living Reasons is being created to fix what we think is a challenging situation that is getting harder to achieve every week, month and year in the current economic, political, environmental and societal landscape. It is not easily defined but we hope the charity objects below will help put context to what we want to achieve, what we can say is that below are the issues we are trying to address, how we do this will change as quickly as society does, but the issues we want to tackle are these:

1) Outdated and damaging employment practices

2) Accessibility to services

3) Limited employment, training and education opportunities

4) Lack of support during times of crisis or need

5) Lack of equity and agency for many people in society

6) Institutional discrimination that is not challenged

7) Abuse of the legal system at all levels

8) Abuse of power in government bodies

9) Poor access to healthcare

10)  Unequal treatment of many people in society by large corporations

11)  Assumptions made by wider society based on incorrect, outdated or discriminatory rhetoric that is used in daily life

12)  Outdated company engagement with the public

13)  Lack of support that is not talked about and not being addressed

Our Living Values -

Creativity

1) Imaginative Development (Individual)

2) Instilled Collaboration (Internal)

3) Changing The Status Quo (External)

Prospectivity

1) What Can You Do (Individual)

2) What Can We Do (Internal)

3) What Can They Do (External)

Revolutionary 

1) Inspire With Confidence (Individual)

2) Boundaryless Innovation (Internal)

3) Challenge Traditions (External)

Attentivity

1) Analyse and Redesign (Individual)

2) Rebel and Reform (Internal)

3) Enquire and Reimagine (External)

Lived Experience Board Member (Advisory Role)

About the Role
At Living Reasons, we believe that real change comes from lived experience. To make sure everything we do is relevant, effective, and grounded in the realities of people’s lives, we are creating a Lived Experience Advisory Board.

This is a non-executive, advisory role. Board members do not carry trustee responsibilities but instead play a vital part in shaping and guiding the organisation. The insights and perspectives of our board members will directly inform the decisions of our trustees, helping us stay focused on what truly matters to the people we support.

How the Board Works

• The board is made up of different lived experience groups, each focusing on particular areas.

• Members can meet in their groups to share experiences, support one another, and identify key issues.

• Groups can also set up their own sub-groups where needed.

• Each group decides what information it wants to share with Living Reasons — members are always in control of their voice.

• From time to time, the full board meets together to discuss wider themes, shared experiences, and how these can guide the direction of Living Reasons.

What You’ll Do

• Share your lived experience in a safe, respectful group setting.

• Take part in discussions, focus groups, and community support activities.

• Contribute to shaping campaigns, policies, and services.

• Review materials, research, and proposals and give feedback to help the organisation grow.

• Be part of a supportive community that uses lived experience to drive meaningful change.

Who We’re Looking For

• People with lived experience of fluctuating conditions, either:
   

  • through your own personal experience, or
     

  • as a supporter, caregiver, guardian, or family member.
     

We will keep these as two separate groups (personal experience, and supporter/caregiver) so that conversations can be open and relevant to each perspective.

Why Join?

• Your experience will drive real change — in Living Reasons and in wider society.

• You’ll be part of a community where lived experience is valued, respected, and heard.#

• You’ll have a direct line to trustees and a say in how resources, campaigns, and priorities are shaped.

What is the plan?

The person who is starting the charity up is autistic, has ADHD, CPTSD and also multiple physical conditions that effect daily life and is part of the LGBTQ+ community and has faced a lot of issues in life because of these things.

Living Reasons is being created to fix what we think is a challenging situation that is getting harder to achieve every week, month and year in the current economic, political, environmental and societal landscape. It is not easily defined but we hope the charity objects below will help put context to what we want to achieve, what we can say is that below are the issues we are trying to address, how we do this will change as quickly as society does, but the issues we want to tackle are these:

1) Outdated and damaging employment practices

2) Accessibility to services

3) Limited employment, training and education opportunities

4) Lack of support during times of crisis or need

5) Lack of equity and agency for many people in society

6) Institutional discrimination that is not challenged

7) Abuse of the legal system at all levels

8) Abuse of power in government bodies

9) Poor access to healthcare

10)  Unequal treatment of many people in society by large corporations

11)  Assumptions made by wider society based on incorrect, outdated or discriminatory rhetoric that is used in daily life

12)  Outdated company engagement with the public

13)  Lack of support that is not talked about and not being addressed

Our Living Values -

Creativity

1) Imaginative Development (Individual)

2) Instilled Collaboration (Internal)

3) Changing The Status Quo (External)

Prospectivity

1) What Can You Do (Individual)

2) What Can We Do (Internal)

3) What Can They Do (External)

Revolutionary 

1) Inspire With Confidence (Individual)

2) Boundaryless Innovation (Internal)

3) Challenge Traditions (External)

Attentivity

1) Analyse and Redesign (Individual)

2) Rebel and Reform (Internal)

3) Enquire and Reimagine (External)

Purpose of the role

To provide a positive, informative, sensitive and safe environment for those affected by EDS to share, learn and form a community.

What will you be doing? • Facilitating and hosting a minimum of 4 support group meetings in your local area every year, in a disabled friendly venue or virtually, using an allocated fund to cover the cost. • Checking your local social media regional group (Facebook) for messages and replying or signposting to the office or a local service. • Keeping up to date with training implemented by EDS UK and having guidance meetings as needed. • Giving facts and figures to your CM after each meeting • Checking your EDS UK email accounts at least once a week and responding to queries • Encouraging attendees to join The Ehlers-Danlos Support UK as a member • Signposting members to other support services • Liaising with fellow Area Coordinators in your region or in the UK

Skills and qualities needed Organised and self-motivated Good communication skills Compassionate and enthusiastic about helping others IT literate (email, Social media) A basic knowledge of EDS/HSD or understanding of chronic illness

Time commitment Quarterly support group meetings of 2/3 hours in length Checking in on the regional Facebook group a few times a week (30 mins per week) Checking and responding to emails as necessary (30 mins per week) Attending occasional Area Coordinator meetings (1 hour once a month) Some Area Coordinators run meetings more regularly, but there is no requirement to do so.

Mandatory Training Adult Safeguarding Fully enhanced DBS check

Benefits Helping others in need of support within the EDS community Making a difference to those around you Bi-annual Fragile Links magazines free of charge Training in relevant subjects Support from your allocated CM as well as from the charity Benefits guides if required Agreed expenses covered Develop your own management and facilitation skills Improve confidence

Support in the role • A full induction programme • We have a closed Facebook peer support group for Area Coordinators only to share experience and ask for information. • The CM’s and office staff will be there to support you within your role and can be in contact with you as much or as little as you need during office hours, and we encourage regular contact with us. We use the AC Facebook group and email to update all volunteers on any information we think they might find useful. • Monthly virtual Area Coordinator support group meeting on Zoom open to all volunteers. • Monthly Manager led AC meetings sharing information, best practice and taking feedback from volunteers. • A dedicated volunteer's website • Regional Messenger volunteer groups • Peer mentoring with an experienced Area Coordinator if requested