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Action Duchenne supports, empower and equip every Duchenne Muscular Dystrophy community in their journey from diagnosis and beyond.
Duchenne Muscular Dystrophy is a muscle wasting condition for which there is no cure, but we journey alongside communities to empower them and provide information for them to make informed decisions. Action Duchenne has a team of passionate, supportive staff who are keen to do more for families living with Duchenne and has several staff with direct lived experience.
At Action Duchenne, values are more than words—they shape how we work and interact every day. For this role, we are looking for a team member who can reflect our values:
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Supportive – Actively assist colleagues and stakeholders, fostering a culture of collaboration and reliability.
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Empathetic – Approach challenges with understanding, considering the impact on people internally and externally.
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Respectful – Ensure all communications and decisions uphold dignity and fairness, especially when handling sensitive matters.
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Community Focused – Make decisions that strengthen our community, ensuring all activity supports inclusive engagement and shared purpose.
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Inclusive – Promote accessibility and equity, ensuring everyone feels valued and heard.
Main Purpose of the Role:
To provide proactive, emotional, and practical support to families and individuals affected by Duchenne Muscular Dystrophy (DMD) across England. 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 our End of Life and Bereavement projects, working collaboratively with healthcare professionals, palliative care teams, and hospices to ensure families have access to appropriate services and resources.
Specific Tasks:
1. Proactive Family Support
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Initiate contact with newly registered families within agreed timeframes (email within 3 working days, call within 7–10 working days)
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Contact to be made to all registered Action Duchenne members, knows to us in the Regions you will be covering, to ensure the current support offer is clear
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Provide ongoing support tailored to individual needs, including emotional wellbeing, physical health, housing, financial security, self-esteem and respect, decision-making, social engagement, quality of life, and access to care
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Use the Action Duchenne Assessment Form and Action Plan to identify and respond to areas of concern
2. Advanced and End-of-Life Care Support
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Provide compassionate, practical, and emotional support to children, young people, and adults living with Duchenne, and their families, as they navigate advanced stages of the condition and end-of-life care.
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Work collaboratively with healthcare professionals, palliative care teams, and hospices to ensure families have access to appropriate services and resources.
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Develop and share guidance, resources, and workshops to help families prepare for and manage advanced care planning, symptom management, and emotional wellbeing.
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Support families in understanding available options for care settings (home, hospice, hospital) and facilitate informed decision-making.
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Ensure continuity of care and communication between multidisciplinary teams, while respecting family preferences and cultural considerations.
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Offer signposting to bereavement support and follow-up services for families after loss.
3. Wellbeing Tracking and Outcome Measurement
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Administer wellbeing questionnaires and record scores across key domains (e.g. physical health, emotional wellbeing, financial security)
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Collaborate with families to co-create action plans and track progress
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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
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Organise and deliver regional meetups (minimum one per quarter)
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Facilitate support groups (virtual and in-person) for parents, young people, and extended family (minimum one per quarter)
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Support delivery of workshops and events aligned with programme schedule (e.g. music, life skills, employability)
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Actively participate in networking events to promote Action Duchenne within our communities, build relationships, and drive growth in membership by encouraging registration of families affected by Duchenne
5. Stakeholder Collaboration
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Liaise and develop relationships with external organisations including NHS care advisors and clinics, local authorities, counselling services, and other charities
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Represent Action Duchenne in across your regions and build relationships with local networks
6. Administration and Reporting
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Maintain accurate records of all interactions and support provided
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Contribute to quarterly reporting on activity delivery, capacity utilisation, and family impact
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Support development of CRM processes and service delivery improvements
7. Key Performance Indicators (KPIs):
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New contact acknowledgement email: within 3 working days
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New contact follow-up call: within 7–10 working days
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Families contacted per week: 12–15 hours of direct contact
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Regional meetups: 1 per quarter
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Support groups delivered: 9–12 per year
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CRM data entry: within the same day of interaction
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Family outcomes tracked: via wellbeing questionnaire and action plan
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Number of families receiving end-of-life care guidance or resources per quarter.
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Advance Care Planning: Percentage of families supported with advance care planning discussions within 4 weeks of request.
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Palliative Care Signposting: Number of referrals/signposts made to palliative care or hospice services.
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Resource Development: Number of end-of-life care resources (guides, workshops, webinars) created and shared annually.
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 the job specification, including required skills and qualifications below.
Application deadline: 22nd December at 9am GMT.
Registered Charity
11 - 20
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.
Thank 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!
Job summary
The Head of Services and Support is a key role at Bowel Cancer UK, leading the delivery of our patient support services. We currently provide high-quality support, but we know we need to do even more - reach more people and have an even greater impact.
The Head of Services and Support will lead the development and delivery of our patient support services. This is a pivotal role with key areas of focus:
- Drive innovation in patient support.
- Expand our reach and accessibility to ensure no one faces bowel cancer alone.
- Build strong partnerships with stakeholders.
- Champion technology and digital solutions to enhance service delivery.
You’ll work closely with the Director (Senior Leadership Team), your colleagues on the Extended Leadership Team and your services team to set strategic direction and ensure our services are impactful, inclusive, and evidence based.
Applications will be reviewed and interviews conducted on a rolling basis.
Registered Charity
51 - 100
We’re the UK’s leading bowel cancer charity. We’re determined to save lives and improve the quality of life of everyone affected by bowel cancer.
The client requests no contact from agencies or media sales.
Thank you!
The role
The Project Officer will be responsible for the day-to-day delivery of our Council funded Adult Bereavement Service in Cornwall and the Isles of Scilly. This service aims to provide accessible, accessible, empathetic and effective support for adults affected by bereavement, particularly sudden or drug/alcohol-related deaths. The Project Delivery Officer will work collaboratively as part of the local and regional volunteer and staff team. We welcome applications from candidates who wish to job-share the responsibilities of this role.
How to apply
Your application must consist of a CV and covering letter, which outlines your suitability for the role with reference to the Job Description and Person Specification and should be no longer than two pages.
The closing date for applications is the 17th of December 2025 with interviews taking place on W/C 12th January via zoom or Teams due to the festive break.
Please be advised that if you do not hear from us by Thursday 8th January unfortunately on this occasion you have not been shortlisted.
Cruse welcomes and encourages applications from all protected groups as defined by the Equality Act 2010. Appointment will be made on merit.
Criminal Record Checks
All staff are required to complete a Criminal Record check. Staff working directly with clients will be required to complete an enhanced check. We comply with the relevant codes of practice and they can be viewed online:
· Applicants in England and Wales: DBS Code of Practice
· Applicants in Northern Ireland: AccessNI Code of Practice
· Applicants in Scotland: Disclosure Scotland Code of Practice
Previous convictions will not prevent full consideration of your application to work with Cruse. Our Recruitment of Ex-offenders' Policy & Handling Criminal Record Check Data Policy are available on request by email.
We comply with all relevant data protection legislation and process your data fairly.
The client requests no contact from agencies or media sales.
Thank you!
Location: Home Based with regular national travel
Since 1962 the National Autistic Society has been campaigning to transform lives, change attitudes and create a society that works for autistic people. In National Programmes we champion the rights and interests of autistic people and their families, making sure national policy and legislation to reflect their needs. We provide autism training and best practice services and want all autistic people to have access to services and support that fully meet their needs. We provide diagnostic services, training, accreditation, consultancy and conferences, designed to support all professionals and organisations.
The Supporter Fundraising team is responsible for managing and growing all supporter-led fundraising activity, including third-party challenge events, community fundraising, and our own portfolio of fundraising events. Together, our work generates over £1 million in income each year—vital funds that help the National Autistic Society achieve its mission: a society that works for autistic people.
Visit our website to find out more about who we are and what we do:
Who we are looking for:
We are seeking a proactive and creative Senior Events Fundraising Officer to join our dynamic team on a permanent basis.
This is an exciting opportunity for someone who is passionate about events fundraising and eager to take ownership of a diverse portfolio. You’ll play a key role in developing new fundraising events, supporting and inspiring colleagues, and delivering excellent supporter experiences that maximise income and impact.
The role will involve:
- Leading on a portfolio of owned and third-party fundraising events, including feasibility research, planning, marketing, participant recruitment, logistics, budgeting, and evaluation.
- Taking a lead role in the development of new fundraising events in collaboration with the Innovation Team, from research and proposals through to approval, delivery and evaluation.
- Providing first-class supporter care, ensuring participants feel valued and engaged, and that income and expenditure targets are met or exceeded.
- Working closely with marketing, press and PR colleagues to create and implement event promotion and communications plans, across both traditional and digital channels.
- Line managing and supporting Events Officers where appropriate, and deputising for the Events Fundraising Manager when required.
- Building and maintaining strong relationships with internal stakeholders, suppliers, and event providers to ensure effective delivery and the best possible experience for supporters.
- Overseeing volunteer recruitment and stewardship plans to increase engagement and retention.
The successful candidate will bring:
- Experience of planning and delivering fundraising events, with proven ability to meet financial targets.
- Strong relationship-building skills, with confidence in working with a wide range of stakeholders.
- Excellent organisational skills, with the ability to manage multiple projects and deadlines.
- A creative, innovative mindset and a passion for developing new fundraising opportunities.
- A commitment to delivering outstanding supporter care and improving supporter journeys.
This is a full-time, permanent role, for 35 hours per week. The salary for this position is £32,577 per year.
To view the full job description please click
What we can offer you:
- Auto-enrolled Pension Scheme
- 25 days annual leave plus bank holidays
- Excellent induction, training and development programme including training about autism and opportunities to attend our conferences
- Online staff discount scheme for a range of benefits such as cycle to work scheme, season ticket loan & shopping discounts for places such as Asda, Tesco, Sainsburys, Halfords, Nike, Apple and loads more!
- Healthcare Cash Plan
- Life Assurance at 2 x base salary
- A portfolio of fantastic new salary sacrifices benefits and other flexible benefits private health, dental insurance, car salary sacrifice scheme, activity pass, holiday trading, enhanced pension & salary deduct loans (eligibility criteria may apply)
- Access to a 24-hour Employee Assistance Programme & counselling programme
- Free access to the Headspace App – a global leader in mindfulness and you can enrol up to three friends or family for free!
- Eligibility for a Blue Light Card
Where you will be working:
City Road, London / Homeworking / Hybrid
(Up to 20% national travel, including some evenings and weekends, as required.)
About our application process:
When providing a supporting statement, please refer to the job description and person specification and include any information that shows your suitability for the role.
For more information about this job, please contact Jonathan Littledale – Events Fundraising Manager ( ########### )
We do reserve the right to close this advertisement early if we receive a high volume of suitable applications.
For some roles, successful applicants will be required to complete the relevant safeguarding checks which will include additional references and criminal background checks.
Applications for this job are sought from anyone who is suitably qualified and experienced for the role but particularly welcome from those with a diagnosis of autism.
The National Autistic Society is committed to safeguarding and promoting the welfare of all children and adults who use our services and as such expects all staff and volunteers to share this commitment. Successful applicants will be required to complete the relevant safeguarding checks.
We are an equal opportunities employer
