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About the role
We’re seeking a PPIE Manager to lead and strengthen patient involvement across mitochondrial disease research. As an equal partner in the LifeArc Centre for Rare Mitochondrial Diseases, The Lily Foundation leads the programme’s patient and public involvement strategy.
While the initial priority for this role is delivering the PPIE strategy for the LifeArc Centre, as a permanent member of the team, you’ll be responsible for building a sustainable involvement infrastructure that extends across all Lily Foundation research workstreams.
You’ll become a ‘patient expert’ who can bridge the gap between the patient community and the scientific world. You’ll be proactive in upskilling and empowering both patients and researchers, ensuring that lived experience remains the compass for future research.
Key responsibilities
Person specification
We’re looking for someone who blends a professional background with a genuine heart for our cause.
Essential knowledge and skills
Essential experience
We reserve the right to close the application window early and advise candidates to apply in good time to avoid disappointment. We particularly welcome applications from people with lived experience of mitochondrial disease or other rare conditions.
Closing date: Monday 11th May 2026
Interviews: W/c 18th May 2026
The client requests no contact from agencies or media sales.
Are you someone who can build trusted relationships across sectors, develop sustainable income, and turn strategic opportunities into meaningful impact?
Are you looking for a part-time, senior role where you can shape organisational direction, grow partnerships, and deliver programmes with national and international reach?
The Design in Mental Health Network (DiMHN) is a UK-based charity dedicated to improving mental health outcomes through better design. We are seeking a strategic and entrepreneurial Head of Partnerships & Programmes to play a central role in our next phase of growth.
In this role, success will mean building high-value partnerships, growing sustainable income, and delivering programmes that expand DiMHN’s impact and influence.
WHAT YOU'LL BE DOING
Reporting to the Chief Executive, you will:
WHO WE'RE LOOKING FOR
We are looking for a strategic, relationship-driven leader who can translate opportunity into impact, income, and influence.
Knowledge and experience
You will bring:
Knowledge of the mental health, healthcare, design, or built environment sectors is welcome, but not essential.
Personal attributes
You will be:
WHAT YOU'LL GET IN RETURN
As part of the team, you will benefit from:
NEXT STEPS
Please see https://bit.ly/DIMHNPartnershipsProgrammes for our Candidate Pack, application instructions and details about the interview process.
The Design in Mental Health Network (DiMHN) is a charity dedicated to improving the design of mental health environments.
The client requests no contact from agencies or media sales.
We’re looking for a People and Culture Manager to shape and lead Amala's first dedicated people function, ensuring our global team is supported by rigorous and human-centred people practices. You will work closely with the Head of Finance and our international leadership team to manage the end-to-end team member lifecycle and continuously foster a deep sense of belonging across our remote workforce.
Who we are
Amala’s mission is to use the power of education to transform the lives of young refugees, their communities and the world. We are a non-profit organisation with big ambitions to create a deep and lasting impact for young people who are displaced. We have developed the first accredited secondary level programme and qualification for out of school refugee and crisis affected youth, and we also offer Changemaker Courses in areas such as Peace-building, Ethical Leadership, and Social Entrepreneurship. Our approach to education is conveyed through our human-centred, context-inclusive curricula and learning programmes that are relevant to the lives that our students lead today and will lead in the future.
Key responsibilities
Recruitment & Onboarding: Lead end-to-end hiring and design onboarding programmes that strictly adhere to Safer Recruitment requirements.
Performance & Development: Manage the annual review cycle and coach managers to have meaningful, development-focused conversations.
Policy & Culture: Act as a custodian of Amala’s culture while maintaining compliant HR and policies and the Single Central Record.
Compensation: Maintain our job grading framework and lead salary benchmarking against the NGO sector.
You will be successful if you have
CIPD Level 5 qualification and proven HR management experience within an NGO or mission-driven organisation.
The ability to navigate the nuances of supporting globally distributed teams across different cultures and time zones.
A human-centred mindset that balances rigorous HR compliance with empathy and a commitment to team wellbeing.
All roles at Amala are open to applications from all sections of society. We believe in the potential of everyone regardless of race, religion or belief, ethnic origin, disability, sexual orientation, family structure, economic background, age, nationality or citizenship, gender identity, marital or civil partnership status, pregnancy or maternity, age, or any other characteristic protected by law.
Safeguarding children, young people and vulnerable persons is a priority for Amala. All team members are expected to share that commitment and adhere to Amala’s Safeguarding and Welfare Policy and Team Code of Conduct. Any offer of appointment by Amala is conditional on satisfactory pre-appointment checks.
How to apply
Read the job description for more details on the role and for information on how to apply.
Deadline: Monday 18 May 2026, 12:00 BST
Our mission is to use the power of education to transform the lives of refugees, their communities and the world.
The client requests no contact from agencies or media sales.
Using Anonymous Recruitment
This organisation is using Anonymous Recruitment to reduce bias in the first stages of the hiring process. Submit your application as normal and our system will anonymise it for you. Your personal information will be hidden until the recruiter contacts you.
Help support our members and their families who are diagnosed or going through diagnosis of a rare neurological condition.
Provide support to those affected by a life changing diagnosis at a very difficult time and make a difference that counts!
Myaware is a charity dedicated to ensuring that all people living with or alongside myasthenia can live well, now and in the future. Due to demands on the service we are looking to expand our crucial support team which has provided an exciting opportunity to join the team.
You will be working with our dedicated support team to advise and support our members, over the phone, via email, in online sessions and at conferences and support groups in the community. Providing a listening ear and advice on living with myasthenia is essential as they navigate their diagnosis journey and learn how to live well with the condition.
Delivering support and advice for our members also involves using our CRM database and proactively maintaining and increasing our membership. It requires ongoing essential awareness raising of our work through annual initiatives and campaigns and through growing relationships with Healthcare Professionals and other neurological organisations.
Who are we?
Myaware is the only charity in the UK dedicated solely to the care and support of people affected by myasthenia.
We are working hard to raise awareness of myasthenia, as it is a little-known condition. We provide support for people with myasthenia and their families, whilst offering advice and tips for living with the condition.
We also fund the research that brings us closer to finding a cure as well as funding specialists nurses and advisors.
Members of myaware have full access to a wide range of support services and events including our specialist welfare rights advisor.
Myaware supports people with myasthenia and their families. We campaign for better medical services for people with myasthenia and work to inform medical professionals.
The myasthenias are a group of neuromuscular conditions. They are rare but also manageable and can affect anyone, regardless of age, gender or nationality. Myasthenia gravis, ocular myasthenia and Lambert-Eaton myasthenic syndrome are autoimmune conditions whereas congenital myasthenic syndrome is caused by an inherited genetic fault. It is thought that there are approximately 20,000 people currently living with myasthenia in the UK.
Benefits
Discretionary £1,000 increase after successful completion of probationary period
Application Instructions
Candidates should submit their CV and tailored covering letter by 23:30 on Friday 8th May 2026
Initial screening chats will take place on Thursday 14th May 2026
Interviews will be week commencing 25th May 2026
Interviews will be held over Microsoft Teams
Applications submitted without a tailored cover letter will not be considered.
This post, due to its nature, duties and responsibilities, will be subject to an enhanced check by the DBS. This is funded by Myaware.
This organisation supports anonymous recruitment. That means hiding your personal identifying information, removing bias from the hiring process.
The client requests no contact from agencies or media sales.
Salary: £35,668 – £39,005 pro rata
Hours: Part-time (21 hours per week)
Contract: Permanent
Location: Home-based (with regular travel across Brentwood Diocese)
About the role
CAFOD is looking for a Community Participation Coordinator to grow engagement across the Catholic community in Brentwood Diocese.
You’ll inspire and support volunteers, build strong relationships with parishes and clergy, and increase participation in CAFOD’s work to tackle poverty and injustice.
Working as part of a regional team, you’ll help deliver plans that drive volunteer engagement, fundraising, and community action.
Key responsibilities
About you
Additional information
The full job description is available on CAFOD's careers page
CAFOD is a welcoming, supportive workplace committed to a safe, inclusive culture where everyone is respected. CAFOD will make reasonable adjustments at every stage of the recruitment process to ensure candidates with disabilities or individual needs are fully supported.
Safeguarding for Children and Vulnerable Adults
CAFOD recognises the personal dignity and rights of children and vulnerable adults, towards whom it has a special responsibility and a duty of care and respect. CAFOD, and all its staff and volunteers, undertake to do all in our power to create a safe environment for children, young people and vulnerable adults and to prevent their physical, sexual or emotional abuse. CAFOD is committed to acting at all times in the best interests of children and vulnerable adults, seeing these interests as paramount. Any candidate offered a job with CAFOD will be expected to adhere to CAFOD’s Safeguarding policy and sign CAFOD’s Code of Behaviour as an appendix to their contract of employment and agree to conduct themselves in accordance with the provisions of these documents. This post involves contact with children and young people and applicants will be subject to specific checks related to safeguarding issues. The post holder is required to present or obtain a Disclosure from the DBS (Disclosure & Barring Service).
All offers of employment will be subject to satisfactory references, and appropriate screening checks can include criminal records and terrorism finance checks. CAFOD also participates in the Inter Agency Misconduct Disclosure Scheme. In line with this Scheme, we will request information from job applicants’ previous employers about any findings of sexual exploitation, sexual abuse and/or sexual harassment during employment, or incidents under investigation when the applicant left employment. By submitting an application, the job applicant confirms their understanding of, and consent to, these recruitment procedures.
CAFOD is the official Catholic aid agency for England and Wales tackling poverty and injustice across the world.
Actively Interviewing
This organisation is scheduling interviews as applications come in. They're ready to hire as soon as they find the right person. Don't miss your opportunity, apply now!
Harris Hill is delighted to be supporting Consumers International in their search for a Strategic Growth and Engagement Lead, Sustainability. This is a brilliant opportunity for someone who wants real ownership in their role—where you can take an idea, build it, and run with it on a global stage.
Working at the heart of Consumers International’s sustainability programme, you will drive partnerships, funding and influence across areas such as energy, materials and food systems. This is not a role focused on maintaining the status quo; instead, you’ll have the freedom and trust to shape new opportunities, test ideas and deliver growth that creates genuine global impact, with scope to truly make the role your own.
Key responsibilities
· Build and manage a strong pipeline of global funding and partnership opportunities
· Develop compelling proposals and innovative partnership models
· Lead on relationship management and supporting partners in their Change Network ( you can view here.)
· Shape and deliver a growth strategy for the sustainability programme
· Represent the organisation at international events and forums
· Create opportunities for global members to engage, collaborate and influence
About you
· Proven experience in partnerships, fundraising or business development
· Track record of securing income from foundations, corporates or multilateral organisations
· Experience working across international and cross-sector environments
· A strategic and proactive mindset, with the ability to spot opportunities and run with them
· Strong communication, influencing and relationship-building skills
· A genuine interest in sustainability and systems change
Key details
Salary: Up to £50,000
Location: Fully remote – open to candidates globally
Contract: Full-time
Applications: Rolling basis – please apply ASAP as applications are reviewed weekly
Apply to Hannah at Harris Hill to learn more and get the full job pack
As leading charity recruitment specialists and a certified B Corp™, Harris Hill is committed to high and ever-improving standards of equitable and inclusive recruitment. We actively welcome applications from all sections of the community regardless of age, disability, gender, race, religion, sexuality and other protected characteristics
Actively Interviewing
This organisation is scheduling interviews as applications come in. They're ready to hire as soon as they find the right person. Don't miss your opportunity, apply now!
Shine supports a community of over 15,000 members living with spina bifida and/or hydrocephalus, including 5,000 children and young people (0–25).
You will be delivering high-quality support and creating opportunities for children and young people living with spina bifida and/or hydrocephalus and their families/carers. Supporting Shine members to lead healthy, independent, and fulfilling lives by improving condition management and fostering connections within the Shine community.
This role will focus on children and young people (0–25), you will be primarily working within the Children, Young People and Families team. However, there will be occasions when you will work across age groups to ensure the best outcomes for our members.
The role is home-based but you will be required to attend regular clinics in London including GOSH (Great Ormond Street Hospital). Other travel across Southern England including Bristol, Devon and Hampshire may be required. There will be occasional travel required across wider areas and nationally including attendance at events, conferences and meetings at our head office in Peterborough.
Benefits:
Competitive salary: Review due April 2027
Regular working hours, and no shift work (some very occasional weekends or evenings)
3% pension contribution
25 days annual leave plus bank holidays, with additional discretionary leave between Christmas and New Year
Additional annual leave awarded for ‘long service’
Opportunity to purchase additional annual leave
Broadband allowance for home-based roles
Life insurance after 12 months’ employment
Access to our Employee Support Programme and Mental Health First Aiders
Support to learn and develop
How to apply
Shine is a Disability Confident employer and will offer guaranteed interviews if a disabled applicant meets the minimum criteria for the job.
If you would like to discuss the role please email Gill Valentine, Deputy CEO, to arrange a convenient time for a call.
To apply please submit your CV and supporting statement, which should outline your interest and explain how you meet the role criteria.
*Please note applications without a supporting statement will not be accepted*
We understand that you may wish to use AI tools to help you with some aspects of your application, but we do expect tailored applications which are personalised to your experiences and not generic applications which are completely AI generated. We encourage candidates to be transparent about AI usage in their applications.
Closing date: Monday 17th May 2026 at 11pm
Interviews: Tuesday 26th May 2026 (Virtual)
Please note: we reserve the right to interview suitable candidates before the closing date, therefore we encourage applications as soon as possible.
Please see full details on the Job Description and Person Specification document below and on our website.
Providing specialist advice and support for spina bifida and hydrocephalus



The client requests no contact from agencies or media sales.
JOB TITLE: Membership Executive (England)
CONTRACT: Permanent, Part Time (28 hours per week)
ORGANISATION: Royal Life Saving Society UK (RLSS UK)
DEPARTMENT: Membership & Education
LOCATION: Home/Field based
*with regular travel throughout England and to RLSS UK HQ, where required
REPORTS TO: Head of Membership
SALARY:£27,308 (Grade E) *Pro-rata for Part Time Hours
ROLE OVERVIEW
We are seeking a self-motivated, personable, and enthusiastic individual to work as part of a team to support and grow our Branches and our lifesaving clubs as well as developing and grow recognition of and participation in Lifesaving Sport.
Pivotal to the role will be the collaboration with external agencies and clubs in England, to strengthen and publicise our water safety education throughout the region together with supporting the needs of clubs in the region.
KEY TASKS, ROLES, AND RESPONSIBILITIES
Other Duties & Responsibilities
This job description is not to be regarded as exclusive or exhaustive. It is intended as an outline indication of areas of activity and responsibility and will be amended in light of the changing needs of the organisation.
PERSON SPECIFICATION
Essential Relevant Experience, Skills and/or Aptitudes
Desirable Relevant Experience, Skills and/or Aptitudes
YOUR STRENGTHS
Personable – You can communicate effectively with people at all ages and levels.
Relationship Building – You can develop positive and long last relations with clubs, organisations, and partners.
Flexibility – You remain adaptable and flexible in the face of unfamiliar or changing situations.
Empathy – You readily identify with other people’s situations and can see things clearly from their perspective.
Initiative – You take independent action to make things happen and to achieve goals.
Resilience – You deal effectively with setbacks and enjoy overcoming difficult challenges.
Optimism – You remain positive and upbeat about the future and your ability to influence it to your advantage.
Developing Others – You promote other people’s learning and development to help them achieve their goals and fulfil their potential.
YOUR APPLICATION
Please send your CV and a Cover Letter outlining why you should be our next Membership Executive (England)
Closing Date – 5pm, Wednesday 13 May 2026
Interview Date – Thursday 21 and Friday 22 May 2026 our Worcester Head Office (subject to change)
WHAT RLSS UK CAN OFFER YOU
*Subject to eligibility criteria
Should you wish to discuss the role, any reasonable adjustments you may require throughout the recruitment process, or have any questions, please get in touch where a member of the RLSS UK HR Department will be happy to help.
RLSS UK are a Disability Confident Committed Employer and an INclusive Worcestershire Leader.
It is our vision to have nations without drowning where everyone can safely enjoy being in, on or near water.
The client requests no contact from agencies or media sales.
Using Anonymous Recruitment
This organisation is using Anonymous Recruitment to reduce bias in the first stages of the hiring process. Submit your application as normal and our system will anonymise it for you. Your personal information will be hidden until the recruiter contacts you.
Actively Interviewing
This organisation is scheduling interviews as applications come in. They're ready to hire as soon as they find the right person. Don't miss your opportunity, apply now!
This is an exciting opportunity to be part of a passionate, supportive team and to help grow community and events frundraising directly enables Bipolar UK to reach more people, reduce harm, and save lives. You will be trusted to lead, encouraged to innovate, and supported to do your best work.This is a management role focussed on strategic planning, enabling delivery and leading a small team to perform at their best.
Working closely with the Director of Fundraising and alongside the Strategic Partnerships and Trusts teams, you will be responsible for setting clear plans, developing effective fundraising approaches, and ensuring strong systems, processes and supporter experiences are in place to drive sustainable income growth.
You will lead the delivery and development of community fundraising, challenge events, individual giving through community activity, and in-memory fundraising. A key part of the role will be developing a clear and engaging events and fundraising volunteer offer, including an effective induction process that enables volunteers to fundraise confidently on behalf of Bipolar UK.
This role requires a thoughtful, organised and people-centred manager who understands how to balance ambition with compassion in a mental health charity context.
Key Responsibilities
1. Strategic leadership and planning
2. Community and events fundraising delivery
3. Volunteer fundraising offer
4. Digital campaigns and income growth
5. Supporter experience and stewardship
6. Team leadership and organisational contribution
Essential Criteria
Desirable Criteria
Please submit a CV and a cover letter of no more than 2 pages, outlining your suitability for the role and our experience using the essential and desirable criteria.
Our mission is to empower everyone affected by bipolar to live well and fulfil their potential.
The client requests no contact from agencies or media sales.
JOB TITLE: Membership Executive (Wales and Ireland)
CONTRACT: Permanent, Part Time (21 hours per week)
ORGANISATION: Royal Life Saving Society UK (RLSS UK)
DEPARTMENT: Membership and Education
LOCATION: Home/Field based
*with regular travel throughout Wales and Ireland, and to RLSS UK HQ, where required
REPORTS TO: Head of Membership
SALARY: £27,308 (Grade E) *Pro-rata for Part Time Hours
ROLE OVERVIEW
We are seeking a self-motivated, personable, and enthusiastic individual to work as part of a team to support and grow our Branches and our lifesaving clubs as well as developing and grow recognition of and participation in Lifesaving Sport.
Pivotal to the role will be the collaboration with external agencies and branches and clubs in Wales and Ireland, to strengthen and publicise our water safety education throughout the region together with supporting the needs of clubs in the region.
KEY TASKS, ROLES, AND RESPONSIBILITIES
Other Duties & Responsibilities
This job description is not to be regarded as exclusive or exhaustive. It is intended as an outline indication of areas of activity and responsibility and will be amended in light of the changing needs of the organisation.
PERSON SPECIFICATION
Essential Relevant Experience, Skills and/or Aptitudes
Desirable Relevant Experience, Skills and/or Aptitudes
YOUR STRENGTHS
Personable – You can communicate effectively with people at all ages and levels.
Relationship Building – You can develop positive and long last relations with clubs, organisations, and partners.
Flexibility – You remain adaptable and flexible in the face of unfamiliar or changing situations.
Empathy – You readily identify with other people’s situations and can see things clearly from their perspective.
Initiative – You take independent action to make things happen and to achieve goals.
Resilience – You deal effectively with setbacks and enjoy overcoming difficult challenges.
Optimism – You remain positive and upbeat about the future and your ability to influence it to your advantage.
Developing Others – You promote other people’s learning and development to help them achieve their goals and fulfil their potential.
YOUR APPLICATION
Please send your CV and a Cover Letter outlining why you should be our next Membership Executive (Wales and Ireland)
Closing Date – 5pm, Wednesday 13 May 2026
Interview Date – Thursday 21 and Friday 22 May 2026 our Worcester Head Office (subject to change)
WHAT RLSS UK CAN OFFER YOU
*Subject to eligibility criteria
Should you wish to discuss the role, any reasonable adjustments you may require throughout the recruitment process, or have any questions, please get in touch where a member of the RLSS UK HR Department will be happy to help.
RLSS UK are a Disability Confident Committed Employer and an INclusive Worcestershire Leader
It is our vision to have nations without drowning where everyone can safely enjoy being in, on or near water.
The client requests no contact from agencies or media sales.
Transport for All has a strong reputation for leading the debate and advocating for change to improve the journeys made by disabled people. This role presents an opportunity for a strong leader with the commitment, enthusiasm and expertise to build on our success.
Our Chief Executive will be responsible for continuing to delivering the remainder of our 5-year strategy, whilst horizon-scanning to work with the team and wider DPO community to engage in the opportunities and changes ahead. We’re a small team and this is a wide-ranging role which includes:
• Representing the voice of the 16 million+ people in the disabled community by influencing policy and infrastructure decision-makers through our campaigns.
• Overseeing a highly regarded policy and public affairs function with associated communications and stakeholder engagement, maintaining our high profile and reputation with national and local governments.
• Ensuring the charity’s funding is robust and sustainable, looking at how we can diversify our income and direct it towards what matters through continuing to deliver our strategy and planning for our future.
• Overall responsibility for our successful training, research and consultancy business, building partnerships and further growth. This includes the National Accessible Transport Survey.
• Championing our award-winning support services for disabled people.
• Leading our expert teams through a period of growth and consolidation, embedding a strong organisational culture and matching our structure and systems to our upcoming challenges and increasing size.
You will report to and be supported by a well-functioning and committed Board of Trustees who are professionals with experience of working in the charity and transport sectors, as well as finance, legal and government backgrounds.
Transport Justice for disabled people.
The client requests no contact from agencies or media sales.
We are seeking an enthusiastic and efficient Partnerships Coordinator to join our dynamic team. The main purpose of this role is to support the delivery of high-quality partner engagement and stewardship, ensuring positive and responsive partner experiences. You will be involved in the development of compelling partner communications, and proactively identifying new funding opportunities. Additionally, there will be opportunity to support the implementation of organisational system and process improvements. Essential attributes for this role include a willingness to learn, enthusiasm, drive and a proactive mindset.
If you are passionate about making a difference in the global health or non-profit sector, keen to work with a collaborative & dedicated team, thrive on building and maintaining strong relationships with corporate partners, and eager to get involved in improving internal systems and processes, we would love to hear from you.
Experience & Skills:
Essential:
Desirable:
Why join us?
Other essential:
First stage interviews will be conducted on 2 & 3 June.
Our vision is a world in which both the prevention and care of people living with obesity are embedded in global values and systems.
The client requests no contact from agencies or media sales.
Do you want to change the world for vulnerable children?
The Consortium of Voluntary Adoption Agencies UK (CVAA) aims to improve adoption policy and practice across the UK for the benefit of children, challenging the adoption system to deliver for children and work in their best interests. Alongside advocating for system change, CVAA works to support our member voluntary adoption agencies (VAAs) across the four nations of the UK, stimulating innovation and ensuring they stay at the leading edge of practice. The active engagement of members and the building of collaborative alliances with others who seek positive change for children are essential to the effectiveness of our work.
The Head of Policy is a vital member of the small CVAA team, working closely with the CEO and Board of Trustees to champion the voluntary adoption sector and put children at the heart of everything we do. Due to maternity leave we have an exceptional and unique opportunity for someone who shares our passion to change the world for children, to gain valuable experience working at national level with senior stakeholders to contribute to system change, advocating for the power of adoption to change lives.
You will need strong people skills, experience of developing policy in consultation with stakeholders and using data to transform services and strengthen lobbying work. Most of all you need a cast iron commitment to change the world for vulnerable children.
CVAA works to challenge discrimination and disadvantage and welcomes applications from all communities, particularly those who are underrepresented in our sector, which includes but is not limited to people from Global Majority backgrounds, adoptees, men and those who identify as LGBTQ.
Key information
Applications
Please send a CV and letter of application, outlining your motivation for applying and the skills you offer, to Satwinder Sandhu (CEO) by 5pm on Friday 8th May 2026.
Both Satwinder (CEO) and Alice (Director of Strategy and Policy) are happy to have an informal chat about the role. Please email to arrange a convenient time to speak.
Initial online interviews via Microsoft Teams will be on Monday 18th and Tuesday 19th May, with final in-person interviews scheduled for Thursday 28th May 2026 in London. Please let us know whether you cannot make any of these dates in your application.
The client requests no contact from agencies or media sales.
This is a grant funded role, fixed term for two years, with the opportunity for conversion to a permanent role should funding allow.
Main Purpose of the Role:
To provide proactive, emotional, and practical support to families and individuals affected by Duchenne Muscular Dystrophy (DMD) across Scotland. The role will focus on early engagement, wellbeing assessment, community building, and delivery of workshops and events, while ensuring accurate tracking of support outcomes and data.
The successful candidate will also lead on support for young people living with Duchenne during 2 key transition points (primary to secondary school stage and moving into adulthood). They will work closely with the England-based Transitions Coordinator to deliver a joined-up programme of support across the UK.
Specific Tasks:
1. Proactive Family Support
2. Transitions Support
· Lead transition support across all nations, with a focus on Scotland, for children and young people facing key life changes, including:
· Moving between educational settings such as primary to secondary
· Transitioning from paediatric to adult health services
· Changes in mobility and independence (e.g. transitioning to using powerchairs)
· You will lead, but expected to work collaboratively with the England-based Transition Coordinator to ensure consistency and continuity of support across the UK
· Develop resources, guidance, and workshops to support families through transitions
3. Wellbeing Tracking and Outcome Measurement
· Administer wellbeing questionnaires and record scores across key domains (e.g. physical health, emotional wellbeing, financial security)
· Collaborate with families to co-create action plans and track progress
· Ensure all data is entered into CRM (E-Tapestry or similar) within the allotted timeframe, i.e. immediately after or during the call.
4. Community Engagement and Event Delivery
· Organise and deliver regional meetups (minimum one per quarter)
· Facilitate support groups (virtual and in-person) for parents, young people, and extended family
· Support delivery of workshops and events aligned with programme schedule (e.g. music, life skills, employability)
5. Stakeholder Collaboration
· Liaise with external organisations including NHS care advisors and clinics, local authorities, counselling services, and other charities
· Represent Action Duchenne in Scotland and build relationships with local networks
6. Administration and Reporting
· Maintain accurate records of all interactions and support provided
· Contribute to quarterly reporting on activity delivery, capacity utilisation, and family impact
· Support development of CRM processes and service delivery improvements
7. Key Performance Indicators (KPIs):
· New contact acknowledgement email: within 3 working days
· New contact follow-up call: within 7–10 working days
· Families contacted per week: 12–15 hours of direct contact
· Regional meetups: 1 per quarter
· Support groups delivered: 9–12 per year
· CRM data entry: within 24 hours of interaction
· Family outcomes tracked: via wellbeing questionnaire and action plan
· Transition support delivered: tracked through engagement, resources, and feedback
NB This is not an exhaustive list, the role holder will be asked to carry out additional tasks as required for the Team’s successful service delivery. Such tasks will always be reasonable and broadly in line with current knowledge levels and skill sets.
Please find below the job specification, including required skills and qualifications.
Action Duchenne is a charity providing holistic support to those living with Duchenne Muscular Dystrophy (Duchenne) and their families.



The client requests no contact from agencies or media sales.