Health and research information manager jobs

In this role, you will ensure the smooth and effective running of our Board of Trustees and its supporting committees. Working closely with senior leaders and Board members, you will be responsible for coordinating meetings, preparing high-quality documentation, and supporting compliance with governance and regulatory standards.

You will play an essential part in delivering a professional and efficient meeting management service. This includes planning and scheduling meetings, drafting agendas and papers, maintaining accurate records, and ensuring that best practice principles are upheld across all committee processes.

You may already have experience in committee administration, or you may bring a strong background in general administration or an educational interest in governance and a willingness to learn.

If you’re a quick learner with a keen interest in developing expertise in committee administration, we’d love to hear from you!

We would like to hear from you if you can demonstrate:

• Experience of providing diary management support
• Experience of committee secretarial duties
• Demonstrate customer service exeperience
• Confident written and verbal communication with colleagues and senior stakeholders
• Demonstrate strong organisational skills including the management of multiple activities.
• Delivery of work that is on time and to a high standard with excellent attention to detail.
• Demonstrate a high level of IT skill that can be used to deliver day-to-day work and to improve business processes.

The salary for this position will be between £30,000 - £34,000 depending on experience. This is a full time post at 36 hours per work and will be offered on a permanent basis. We will consider making this a part-time appointment, but no less than 0.8 FTE.

We value spending time working in-person to develop strong connections with each other and with our mission, so you will be based at our central London office for a minimum of three days a week  with the option to work remotely for the remainder of the week.

At the Medical Research Foundation, we believe that diversity drives creativity and innovation. We are dedicated to promoting equality of opportunity, fostering fairness and inclusion, and creating an environment where everyone feels that they belong.

We welcome all applicants including those from individuals from minoritised groups, including those from Black, Asian, and minority ethnic backgrounds, disabled people, and members of the LGBTQI+ community.

Closing Date: 18 June 2025

Interview Date: 1 & 2 July 2025

Sarcoma UK exists to support everyone affected by sarcoma and to ensure their voices shape everything we do. As we prepare to launch our new five-year strategy, this pivotal role will help embed lived experience at the heart of our work.

We are growing our existing Involvement Programme to ensure patients, families, and supporters are meaningfully involved across all areas of Sarcoma UK’s work. As Involvement and Volunteer Coordinator, you will lead the development of our volunteering and involvement infrastructure creating impactful opportunities that inform our services, drive engagement, and raise awareness of sarcoma.

Reporting to the HR and Governance Manager, you’ll work collaboratively across all internal teams and externally with people affected by sarcoma and their support networks. This is a unique opportunity to shape how we involve our community, build capacity, and deliver on our strategic goals.

Benefits

• Flexible working options including hybrid working
• Pension with 5% employer contribution
• 25 days holiday entitlement per annum plus bank holidays and the working days between Christmas and New Year
• Additional day off for your birthday
• Health and wellbeing:
  • Health Cash Plan
  • Therapy sessions
  • Wellbeing Group

Our Values

• Pioneering we are leading the way to a better future for the sarcoma community.
• Together we are creating a community to make a difference for all those affected by sarcoma.
• Expert we use our expertise in understanding sarcoma to deliver better outcomes

Duties and Responsibilites: 

Involving people affected by sarcoma

• Strengthen and support our existing Involvement Network, keeping members engaged and informed.
• Facilitate a variety of inclusive involvement opportunities for people affected by sarcoma, reflecting diverse capacities, interests, and abilities, and ensuring these align with our Equality, Diversity, and Inclusion (EDI) framework.
• Recruit, induct, and train new Involvement Network members, promoting the network through Sarcoma UK’s communication channels.
• Develop systems to capture meaningful feedback and measure the impact of involvement activities.
• Collaborate with colleagues within Sarcoma UK to create and facilitate meaningful involvement opportunities that engage people with lived experience in our work, ensuring these opportunities are inclusive, accessible, and aligned with our strategic goals
• Champion the voice of patients and families across Sarcoma UK’s work.
• Produce and distribute a regular involvement newsletter to communicate opportunities, updates, and information about the work of Sarcoma UK.

Volunteer Management

• Develop and implement a volunteering programme aligned with Sarcoma UK's organisational objectives.
• Design and maintain efficient systems for the recruitment, screening, induction, and support of volunteers.
• Act as the initial point of contact for volunteer recruitment and onboarding, before handing over management to the relevant staff member (e.g. fundraising event organiser or project lead) depending on the role.
• Define clear volunteer roles and pathways that deliver impact and reflect volunteer motivations and interests.
• Plan and deliver engaging training for volunteers based on role requirements.
• Maintain accurate volunteer records using our database (Raiser’s Edge NXT).
• Develop and manage volunteer policies, procedures, and risk assessments.
• Ensure compliance with volunteering regulations and best practice.
• Monitor, evaluate and report on the impact of volunteering initiatives.
• Administer volunteer expenses and coordinate recognition within agreed budgets.

 General

• Support cross-organisational projects that involve people affected by sarcoma.
• Attend Sarcoma UK events and contribute to the wider work of Sarcoma UK.
• Travel occasionally to meetings and events. Occasional evening or weekend work may be required (time off in lieu will be given).
• Work flexibly and collaboratively in a dynamic environment, undertaking other duties as required to support the wider operations of Sarcoma UK.

Join an amazing charity that makes a difference for the 110,000 adults and children in the UK with a muscle-wasting condition. This is a role where you can really make a difference.

The Impact Manager is an exciting role at MDUK, that will sit within the Operations Team.

The main purpose of this role is to work across the organisation to unleash the power of data analysis and curiosity. The role will work with colleagues across different departments to understand their data, find insights and support the team to make data driven decisions and impact reporting. This role will be crucial in continuing Muscular Dystrophy UK’s (MDUK) transition to be a more data driven organisation, including:

- Identifying and developing appropriate instruments for data collection to ensure that accurate impact reporting can be developed for all activities

- Identifying appropriate statistical methodology for data analysis across various departments (quantitative and qualitative as required)

- Work across the organization with Heads of Departments and others to help to identify, understand and quantify the data collection needs

- Act as a business partner to all departments in relation to their impact reporting and data analysis

- Support the Head of Data in administration and integrity of the MDUK databases and data flows between various departments (across Dynamic, Smart Simple, others as required) and provide training and support to the users and to maintain data protocols and policies.

To ensure a first-class Data service is provided to internal and external ‘customers’ with a clear focus, helpful advice, continuous improvement, problem solving and business partner approach. 

About us:

Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to fight muscle-wasting conditions. We bring together more than 60 rare and very rare progressive muscle-weakening and wasting conditions, affecting around 110,000 children and adults in the UK. 

We share expert advice and support to live well now; fund groundbreaking research to understand the different conditions better and lead us to new treatments; work with the NHS towards universal access to specialist health; and together, campaign for people’s rights, better understanding, accessibility, and access to treatments.

Benefits:

We appreciate the range of skills and experience our staff have to offer. In return for your enthusiasm and commitment we commit to actively developing and supporting you. We also offer a range of benefits including pension, life assurance, cycle scheme, health cash plan, financial wellbeing and an employee assistance programme.

Location: We operate a hybrid model (home and office, London SE1). 

Interview will be on a rolling basis: We will actively interview and reserve the right to close this advert once we find the right candidate

Please download the job description to see full role responsibilities

Are you passionate about supporting refugees and asylum seekers through meaningful, holistic services? Do you have the leadership skills to guide a dedicated team delivering frontline advice and support?

We are looking for an experienced and motivated Advice Team Manager to lead our advice services for refugees and asylum seekers. You will oversee our outreach activities, legal clinics, and practical support work across London, ensuring our clients receive high-quality, empowering services tailored to their needs.

We offer a supportive working environment with excellent benefits, including:

• 6% employer pension contribution
• 35 days annual leave (including bank holidays)
• Ongoing training and professional development opportunities

You’ll need:

• Strong management experience in advice or support services
• A deep understanding of the challenges faced by refugees and asylum seekers
• Excellent communication, organisational, and case management skills
• A commitment to equity, inclusion, and high-quality service provision

This is an opportunity to make a real difference in people’s lives, while shaping a vital service within a supportive and mission-driven organisation.

Are you passionate about creating real, lasting change in mental health, learning disability and neurodiversity services? Open Up, the official charity of Devon Partnership NHS Trust, is looking for a skilled and driven Grants Manager to play a vital role in expanding our fundraising success and securing transformative funding.

You'll be at the heart of developing powerful grant applications and building lasting relationships with trusts and foundations to bring life-changing projects to communities across Devon and beyond.

We offer flexible working, a collaborative team and a values-led culture rooted in inclusion, empowerment and innovation. You'll have the freedom to shape strategy, the support to grow professionally and the opportunity to deliver tangible, visible impact.

If you have a talent for storytelling, a head for strategy and a heart for social change, we would love to hear from you. This is your opportunity to deliver visible impact, build brighter futures and be part of something special.

At Yorkshire Cancer Community, our vision is for everyone affected by cancer to have the best support possible. We are a patient-led charity, with a dedicated team of volunteers and staff who are passionate about helping anyone affected by cancer.

Working in partnership with West Yorkshire & Harrogate Cancer Alliance (WYHCA), we aim to help reduce cancer rates through our Cancer SMART project, which raises awareness of the signs and symptoms of cancer, so people are better informed, attend screening and know where to go for help.

Our Patient VIEW project is dedicated to representing the voices of patients, carers and service users, ensuring they are central to decision-making processes within cancer care.

We provide impartial and independent information and listen to those affected by cancer to ensure that they are supported.  We signpost to other charities and support groups, share information, recruit for research studies and share stories via our monthly newsletter.

As manager, you will be instrumental in ensuring we reach our goals, by building relationships with other charities, organisations and diverse groups, recruiting volunteers, working with our board of trustees, working in partnership with the WYHCA, and line management of our two staff members  – Patient VIEW coordinator (FT) and administrator (PT).

Position: Manager

Responsible to: Trustees, Yorkshire Cancer Community (YCC)

Location: Home based - the charity covers all of Yorkshire and the Humber but the main projects and focus are currently within West Yorkshire and Harrogate areas and the postholder will be expected to travel to meetings and events

Hours: 35 hours per week (full time) with some flexibility

Salary: £32,000 - £36,400 depending upon experience + pension 5% employer contribution

Holidays: 25 days + 8 bank holidays + 3 gift days between Christmas and New Year per annum

How to apply: email us for an application pack

Closing date: 29 June 2025

Interviews are currently planned for 9 July at White Rose House, West Parade, Wakefield, WF1 1LT

Key Tasks

1. To engage, manage and supervise Cancer Champions for the delivery of the Cancer SMART  programme with collaboration between Yorkshire Cancer Community and West Yorkshire and Harrogate Cancer Alliance.

2. To build relationships with charities, organisations and diverse groups where we can take Cancer SMART talks and information stalls.

3. To identify, develop and liaise with local individuals and support groups to encourage engagement and involvement within their own cancer communities.  The aim is to provide a channel for patient participation to influence cancer service development and improvement.

4. To administer and oversee the collation and sharing of information relative to the objectives of YCC by using the appropriate means of communication. This will include social media, the website, calendar of events, effective use of YCC data sources and the newsletter.

5. To work with the Board of Trustees to support the governance of the charity which will include the preparation and management of trustee meetings, contribute towards Business planning and unding strategies.

6. To provide supportive supervision to the Administrator and Patient View Coordinator

This job is for you if:-

· You have experience of working with voluntary and community, social enterprise sector (VCSE)

· You have experience of working with diverse groups of people

· You have an understanding of the voluntary sector

· You have excellent communication and interpersonal skills

· You have writing skills to present information in a variety of different formats for various audiences including the general public

· You have accuracy, attention to detail and proofreading skills

· You are skilled in the use of Microsoft Office programmes and the internet

· You are able to prioritise work to meet deadlines and able to manage time effectively

· You have a positive ‘can do’ approach, with a willingness to learn new skills

· You have a proactive and creative approach with the ability to generate new ideas and carry them forward

· You have an understanding of the importance of confidentiality

· You are committed to equality, diversity and inclusion

· You are willing to travel across Yorkshire and the Humber

If you have any questions about the process, or you would like to have an informal discussion about the post, please contact us by email.

Assistant Shop Manager - Nork

You will support the promotion of sustainable shopping and the shop’s social media to increase audience reach, attract customers, donors and volunteer supporters to deliver the Retail Strategy.

Role Requirements

• To maximise shop sales by achieving agreed targets both through donated stock and bought in/new goods. This involves proactive stock generation, optimum pricing, processing stock to agreed amounts and stock planning.
• Achieve Gift Aid sales conversion target through maximising new donor sign up and encouraging repeat donations.
• Achieve the shops Raffle sales targets through involving the shops team.
• To maintain high levels of shop presentation by merchandising and housekeeping to agreed standards as set out in the Shops Operations manual.
• Manage the stock levels of bought in/new goods, to include ordering of more stock as and when necessary and recording key performance indicators (KPIs).
• Assist in holding and attending Fundraising events to promote the awareness of The Children’s Trust.
• To source links with local communities to promote Retail in the community via media and other sources.
• Role involves a degree of manual handling in sorting and lifting of stock.

Interview Date: to be confirmed

Terms and Conditions

Strictly no agencies, please.

About Us

The Children’s Trust is the UK’s leading charity for children with acquired brain injury, providing expert rehabilitation, education, therapy, and care at our national specialist centre in Tadworth, and to children and their families across the UK, via our Brain Injury Community Service.

Boasting a beautiful 24-acre site in Surrey, we are located just outside of London, close to the M25 (accessible via Junction 8, A217 to Tadworth) and easily accessible via National Rail, by way of: Clapham Junction, Sutton, and Epsom.

Staff Benefits

The work we do is highly rewarding, and in addition to an attractive salary, we offer a valuable range of benefits on our staff flexible benefits platform, on-site nursery, free eye tests, enhanced Maternity and Paternity Pay, time out days for those experiencing menopause symptoms and time off for gender reassignment.

We also offer additional annual leave days for those with long service, with entitlements ranging from 35 to 41 days (including bank holidays) depending on your length of service.

Other benefits include free on-site parking; a staff shuttle service from Epsom and Sutton train stations to Tadworth Court, subsidised cafeteria, on-site staff accommodation (subject to availability), the ability to retain your NHS pension (where applicable), Teacher’s pension (where applicable) or the opportunity to join an alternative scheme, and the opportunity to develop your career in a supportive and collaborative environment.

Rehabilitation of Offenders

Many roles at The Children’s Trust are exempt from the provisions of Section 4 (2) of the Rehabilitation of Offenders Act 1974, by virtue of the Rehabilitation of Offenders Act 1974 (Exceptions) Order 1975 (as amended in 2013 and 2020) and as such, are subject to an Enhanced DBS check.  Successful applicants will be required to complete an Enhanced Disclosure & Barring Service (DBS) check, which will disclose all unspent convictions and adult cautions and any spent convictions or adult cautions that would not be protected.  The exceptions to this are our retail roles within The Children’s Trust shops, which are subject to Basic DBS checks which will disclose unspent convictions or adult cautions.

Equal Opportunity Employer

To help us achieve our ambition to give children and young people with brain injury and neurodisability the opportunity to live the best life possible, we want to accurately reflect the UK’s diverse population. We want equity, diversity, and inclusion to be at the heart of everything we do, and our people, services, and culture to reflect the diverse needs of all. Through our diversity and inclusion strategy, we have made a commitment to increase the diversity of our charity and create an inclusive culture. We have networks across the organisation working to ensure that these aims are met - including an LGBTQIA2S+ group, Ethnic Diversity Group, and Spark – our broad EDI group. Read more about our EDI work here. We welcome applications from all who share our ambition regardless of background. We will strive to ensure that any reasonable adjustments are made in respect of interview and working arrangements.

Online Searches

In accordance with statutory safeguarding and child protection guidance, online searches will be conducted for shortlisted candidates before interview. The online searches will be conducted by a person who is independent of the interview and selection process and will focus on relevant information returned via searches of the candidate’s name (and variations thereof). Social media searches will be limited to professional platforms such as LinkedIn. Any concerns relating to suitability for work with children and young people will be forwarded to the interview panel, for discussion during the interview.

The Impact & Grants Manager will work as part of the Philanthropy Fund team to help guide our high net worth and ultra-high net worth clients in their grant making, revealing to clients the impact their generosity has achieved.  Performing thorough and appropriate research on causes that fulfil their giving strategy, you will also empower them to make fulfilling decision summary of the role.

As more wealth passes to the next generation, impact measurement is an increasingly critical aspect of philanthropy, and you will be released to lead the development of this area.

Further to this, the Impact & Grants Manager will give high priority to partner relationships, ensuring transparency and good governance.  You will work closely with the Senior Grants Manager, Relationship Managers and Account Managers to provide an excellent team service for our Philanthropy Fund clients.

The Philanthropy Fund is a growing service, and this role is designed to add expertise and capacity to develop its excellent provision.  You will have the opportunity to learn multiple aspects of the service, and refine the role over time according to emerging client needs.
 

As a result of our Christian ethos, this post is covered by an Occupational Requirement (OR) under Part 1 of Schedule 9 to the Equality Act 2010. The successful applicant will be expected to be a practising Christian and to clearly demonstrate a personal commitment to the mission, principles, values and practices contained in our Ethos Statement, by:

Active membership of local church congregation.

An understanding of the faith aspects of the work of Christian charities, including the preparedness to pray with colleagues, where appropriate.

Individual Giving Manager

Cystic Fibrosis Trust is the only UK-wide charity dedicated to uniting for a life unlimited for everyone affected by cystic fibrosis. We're working towards a brighter future for everyone with cystic fibrosis (CF) by funding cutting-edge research, driving up standards of care and supporting people with the condition and their loved ones every step of the way.
 
This is an exciting new role to grow our individual giving programme, leading a plan to raise more income by finding new supporters and retaining the ones we already have. You’ll have the opportunity to develop new ways of fundraising and see what works best for our future.
 
You will be joining a supportive and ambitious Fundraising department as we embark on a new fundraising strategy (2025-2029), with a renewed focus on growing our supporter numbers alongside growing our income, so we can increase our impact for people with cystic fibrosis.
 
In this role, you will:

• Develop an Individual Giving strategy including short, medium and long-term acquisition and retention plans
• Set and review budgets and KPIs, tracking how well fundraising activities are doing and ensuring we are getting a good return on investment
• Use data and insight to make decisions and improve campaign outcomes
• Ensure all supporters get a warm welcome and have a good experience of the Trust
• Manage the Individual Giving team, providing line management, support and development 
• Collaborate with colleagues across the charity to help establish a Supporter Experience group focused on making sure our supporters feel thanked, inspired and proud of the difference they’re making

 
We’re looking for someone who can think strategically and is results and supporter-focused, with great leadership and relationship building skills. You will enjoy using ideas and data to help raise more money in effective and creative ways.
 
This role can be based at home or at the London office. If you are office-based, you would be expected to attend the office at least two days per week.
 
We will provide you with either London Weighting or a home allowance to support costs of travelling to work or working from home, a laptop, mobile phone and any other essential equipment needed for your role.
 
We offer a range of benefits including flexible working, 30 days annual leave plus bank holidays (this will be pro-rata for part time staff), opportunities for learning and development, pension, healthcare cash plan and more.
 
Closing date for completed applications is 12.00pm on 23 June 2025
 
Interviews expected week commencing 30 June 2025 
 
We reserve the right to bring forward the closing date if necessary. Therefore, if you are interested in this role, please submit your application as early as possible.
 
Please note you will need to have the right to work in the UK before starting work with us and we will check this.
 
No agencies please.
 
How to apply
 
Please see the job description for more information on the role. If you would like to discuss the role before applying, please contact us.
 
To apply, please select ‘Apply Now’ and complete our application form and equal opportunities form.
 
The Cystic Fibrosis Trust aims to be an inclusive workplace where everyone belongs, can be themselves and achieve their full potential. We want to attract, develop, and retain staff with different backgrounds, experiences and perspectives; particularly people who have cystic fibrosis; people who identify as being from an ethnic minority group, as LGBTQ and people with disabilities.
 
It is our policy not to discriminate against any person because of their age, gender reassignment, being married or in a civil partnership, being pregnant or on maternity leave, disability (physical and mental), race including colour, nationality, ethnic or national origin, religion or belief (including lack of belief), sex, sexual orientation or union membership.
 
REF-222 030

We are looking to recruit a motivated and talented individual with strong project management skills to lead the delivery of the training function within the BSI. Reporting directly to the Director of Events and Training, and in collaboration with the wider BSI team, the Training Manager will be responsible for the delivery of existing training programmes and for devising, setting up and rolling out new training courses by working with BSI members to develop content and curricula, utilising different platforms from face-to-face to remote learning and supporting marketing of the courses to relevant sectors.

This role is responsible for engaging with a wide range of stakeholders to help identify training needs and opportunities that the BSI can meet. This will include opportunities in several sectors including clinical, scientific and public/patient focused. Using strong commercial acumen, the Training Manager will be critical in the continued development and growth of the training function to generate significant new income for the BSI.

Are you passionate about making a difference in local communities? Are you committed to working with volunteers and offering compassionate support to people living with or affected by Motor Neurone Disease (MND)?

As a Community Support Coordinator, you will play a key role in delivering and integrating our Community Support Volunteer service. You'll work closely with volunteers, health and social care professionals, and local partners to ensure people living with and affected by MND receive high-quality, accessible, and inclusive support.

Key Responsibilities:

As a Community Support Co-ordinator, you will:

• Lead a team of Community Support Volunteers, recruiting, supporting, and developing them to provide a high-quality service.
• Ensure that support is needs-led, inclusive, and enables personal choice and control.
• Offer guidance to volunteers handling complex care and support issues.
• Respond to enquiries and referrals, providing relevant information and signposting to appropriate services.
• Build strong relationships with care centres, networks, and local partners to integrate community support effectively.
• Support and develop volunteer branches and groups, ensuring they meet local needs and follow organisational policies.
• Identify gaps in care and support services and contribute to plans for improvement.
• Promote collaboration between volunteers, professionals, and people affected by MND to enhance service delivery.
• Facilitate learning and networking opportunities for volunteers.
• Support fundraising and awareness activities alongside colleagues.
• Maintain accurate records and contribute to service development.

About You:

In this role as a Community Support Co-ordinator, you will need experience in managing and supporting volunteers and an understanding of care and support services. You will be committed to delivering inclusive and person-centred support.

We're looking for someone with:

• Experience leading, managing, or coordinating volunteers, ideally in a not-for-profit setting.
• Strong communication, interpersonal, and presentation skills.
• The ability to assess and respond to support needs in a person-centred way.
• Knowledge of care and support services across different sectors.
• Experience working with individuals at risk of harm and their families.
• An understanding of safeguarding and risk management.
• The ability to build and maintain relationships with individuals and partner organisations.
• A commitment to equality, diversity, and inclusive practices.
• The ability to prioritise tasks, plan effectively, and make autonomous decisions.
• Proficiency in using IT systems and applications.
• Flexibility to work outside standard hours when required.
• A full driving licence.

About Us:

Our vision is a world free from MND. Our mission is to improve care and support for people with MND, their families and carers. We fund and promote research that leads to new understanding and treatments and brings us closer to a cure for MND. The Association also campaigns and raises awareness so the needs of people with MND, and everyone who cares for them, are recognised, and addressed by wider society.

What We Offer:

• 28 days holiday, increasing to 33 days after 5 years, plus Bank Holidays.
• Access to UK Healthcare, including dental, eyecare, health screenings, and therapies.
• 24/7 GP access via phone and video.
• Life assurance and confidential counselling helplines.
• Salary sacrifice schemes (Cycle to Work, Buy/Sell Annual Leave).
• Access to Benefit Hub for discounts on everyday shopping.
• Enhanced pension scheme.
• Opportunities for training and personal development.

The full job description is available in the candidate pack.

We are committed to equality, diversity, and inclusivity. We work to remove barriers for everyone affected by MND, employees, volunteers, and stakeholders.

As part of the Disability Confident Scheme, we guarantee interviews for disabled applicants who meet the role's requirements.

How to apply:

Please submit a CV and supporting statement. Your supporting statement should be no longer than one side of A4 and demonstrate how you meet the following areas of the role.

• Experience of leading, managing and/or coordinating self-managed groups of volunteers, ideally in a not-for-profit setting.
• Skills to identify, assess, and respond to support needs through a person-centred approach.
• Demonstrable understanding and delivery of care and support services in the statutory, private and/or voluntary sectors including value and challenges of volunteering.

Important Information:

• We may close applications early if we receive a high volume, so early submissions are encouraged.
• If you require sponsorship for this role, please clearly indicate this in your application.
• Depending on the role, a DBS check may be required.
• If you need reasonable adjustments during the application or interview process, please contact us for support.
• We are happy to consider alternative application formats for those who find the online form challenging.

This is a home-based role covering the Thames Valley region. If you're ready to make a meaningful impact as a Community Support Coordinator and work with a supportive team, we'd love to hear from you!

Every day, the TSA’s small support and information team make a real difference to people affected by the rare genetic condition Tuberous Sclerosis Complex (TSC) and their loved ones. In this vital role, you will help to maintain our high support standards at the TSA, including through operating on the TSA Support Line, developing content for a wide range of platforms and needs, and occasionally attending virtual and in-person TSA events.

You'll be part of a flexible, passionate, welcoming and wholly home-based team, who know they improve the world every single day. The role includes (pro-rata) 25 days annual leave plus 8 bank holidays and the working days that fall between Christmas Day and New Year.

On the TSA Support Line, you will provide support and information regarding TSC via telephone, email and webchat. You will offer an informed, non-judgemental and empathetic listening ear to individuals and families at every step of their journey. The type of enquiries we receive are wide ranging, covering matters such as health, social care and education. You will also engage with professionals supporting people with the condition.

You will have a key role in researching, developing, and updating information across our various platforms including (but not limited to) content for our website, social media, support line materials, leaflets, e-newsletter and our community magazine. The primary audience of the materials will be the TSC community. Materials used by NHS clinics and clinicians are also developed by us, which you will have a central part in developing.

You will help to ensure that our internal processes are effective, and the information that we provide to the TSC community is timely, up-to-date, and relevant.

You will attend TSA events (virtually and in-person) to market the TSA Support Line services, participate in sessions and assist in support-related issues.

We are a small but very impactful charity, where roles are wide-reaching. Although this role is focused on support and information services, the successful candidate should also expect to get involved with projects from other TSA teams including communications, research and fundraising.

Responsibilities

1. TSA Support Line

1.1 Through the TSA Support Line, you will provide information and support to individuals living with TSC, their families and professionals by telephone, email and webchat, ensuring that:

• All enquiries received through the TSA Support Line receive a response based on high quality, up-to-date and evidence-based information.
• You log, triage and respond to enquiries received by telephone, email, post and webchat in line with agreed timelines, policies and procedures.
• You direct non-support related enquiries to appropriate TSA staff, taking messages where necessary.
• You are sensitive and responsive to the needs of the individuals living with TSC, family members and health, social care and education professionals using the TSA Support Line.
• You provide time-limited, structured support through formal case management processes for a small number of individuals and families who are most vulnerable and who need regular help and support. This includes individuals with learning disabilities, autism and complex needs, and families who face a wide range of challenges accessing health, social care and education services for their loved ones.
• You collect and accurately record data enabling the TSA to monitor and evaluate the performance of the TSA Support Line, including usage data (such as number and length of calls), qualitative information (feedback from service users) and data collected in conversation (such as logging broad categories of issues that service users are facing).
• You support individuals and families who wish to apply for financial support from the TSA Support Fund, helping them to complete the relevant application forms, ensuring that they supply documentary evidence, and logging their application appropriately for audit and compliance.
• Your support demonstrates best practice and complies with the law on safeguarding (making sure we are working appropriately with vulnerable adults and children) and data protection (making sure that we are handling all sensitive data appropriately).
• You proactively engage with regular reflective practice and supervision to safeguard your own health and wellbeing and support individual and team learning. This will include individual supervision through regular 1-2-1s with your line manager and team supervision through weekly calls for all those working on the support line.
• You will contribute your expert insight into the challenges and issues that the TSC community are facing to help colleagues across the organisation develop information materials, online resources and event agendas for communications channels including the TSA’s community magazine ('Scan'), our website, social media and events.
• You will ensure that internal processes for recording TSA Support Line enquiries, and signposting information on the support line, are maintained to a high standard and kept up to date.

1.2 You will play a key role in the TSA’s safeguarding as part of your work on the TSA Support Line and in supporting other members of staff with any questions that they have.

1.3 You will ensure confidentiality in the provision of the TSA Support Line, managing conversations and relationships tactfully and diplomatically with members of our small community who may also interact regularly with the charity at face-to-face and virtual events and through our social media channels. 

1.4 You will work closely with colleagues from across the TSA to ensure that our support and information services are joined-up with and informed by other services offered by the TSA more broadly across our website, social media channels, Scan and face-to-face and virtual events.

1.5 You will help to ensure that the TSA Support Line demonstrates best practice in the provision of support and information. You will work with the Joint Chief Executive and Support and Information Manager to develop proposals to develop and market the service that are joined-up with the support provided across our website, social media channels, Scan and face-to-face and virtual events.

2 Support, information and signposting

2.1 Ensure that high quality, up-to-date and evidence-based information is available to individuals and families living with TSC, and the professionals that support them. Regularly review, draft and develop new materials to support people affected by the condition.

2.2 Work with the Joint Chief Executive and Support and Information Manager to develop appropriate and consistent information to signpost TSA Support Line service users to external partner organisations that can provide specialist support for specific aspects of TSC (such as autism or mental health issues) and living with TSC (such as finding a job or facing bereavement).

2.3 Initiate and maintain regular contact with NHS TSC clinics across the UK to encourage greater communication and support between the TSA and TSC clinics. This could include encouraging clinics to join the NHS TSC Rare Disease Collaborative Network (RDCN), liaising with TSA Medical Advisers about medical support line enquiries, or working with clinics to better understand how the TSA can best help them.

2.4 Work closely with the rest of the TSA including communications, research and fundraising, to demonstrate current knowledge of the work of the organisation and developments in TSC.

2.5 Keep up to date with external events and news and draft relevant content for social media, physical media, e-news and the community magazine, Scan, to support and inform the TSC community.

2 TSA events

2.1 Attend TSA face-to-face and virtual events each year to market the TSA Support Line to people living with TSC, their families and professionals (up to approximately seven face-to-face events per year). General events assistance for the event on the day of face-to-face events will also be expected (for example, this could include time on the reception desk or directing attendees between sessions). Face-to-face events could include Outlook (for adults living with TSC), Big Day (our annual meeting for everyone in the TSC community), Family Fun Days (for younger families), TSA Togethers (regional events) and events for NHS TSC clinicians. Time off in lieu will be given for evening and weekend events, or events outside of your usual working days.

2.2 Help to generate ideas for sessions at TSA events by identifying any trends in information and support needs through the TSA Support Line.

4 Supporting health, social care and education professionals

4.1 Develop and maintain training and education materials to help health, social care and education professionals to better understand the impact of TSC.

4.2 Act as a point of contact for professionals who contact the TSA, working with colleagues to build credibility and strong working relationships with them.

Other requirements of the post

The post holder must be prepared to work flexibly to meet the needs of the organisation. This will entail occasional evening and weekend work. Regular travel within the UK will be needed for team meetings, TSA events and training provision. This would normally require access to a car (mileage will be paid) or travel by public transport (tickets will be paid).

The post holder will be expected to have adequate homeworking facilities to allow them to fulfil the role to the best of their abilities.

A DBS disclosure will be required prior to taking up post.

Training on helplines from the Helplines Partnership and on the Virtual Call Centre and database, Beacon, by the in-house team can be provided.

We are seeking a dynamic and experienced strategic lead to drive the next phase of our Right to Health campaign. This new role will work with our experienced and well respected team and our extensive network, to make the political case for the better legal recognition and real-world protection for the right to health. 

An ideal candidate

You will be a passionate and experienced advocate for health, human, social or environmental rights, committed to driving meaningful change in the UK. You will bring proven expertise in leading policy, advocacy, or parliamentary engagement work - ideally within health, human rights, social or environmental justice sectors - and thrive in building strong, strategic relationships with government, civil society, and community stakeholders.

You have a good understanding of the structural causes of health inequality and the power of human rights frameworks to address them. You will know how the UK political and parliamentary systems work, and you are skilled at influencing these processes through clear, compelling narratives backed by evidence.

You are able to communicate with clarity and impact, tailoring your message to diverse audiences - from policymakers to grassroots activists. You are confident working independently and collaboratively within a small, flexible team, balancing strategic vision with practical delivery. Your approach is solutions-focused, inclusive, and grounded in the lived realities of people affected by health inequalities.

Most importantly, you are motivated by the opportunity to join a dynamic and well respected organisation and lead a strategic campaign that challenges the status quo and contributes to a fairer, more just UK.

You have the right to work in the UK and be able to work from home in London or within easy reach of London.  A minimum of weekly attendance in London will be required.

This opportunity is open to applicants wishing to deliver the work on a self-employed freelance or employed basis.

Philanthropy Manager (Major Donors)

Cystic Fibrosis Trust is the only UK-wide charity dedicated to uniting for a life unlimited for everyone affected by cystic fibrosis. We're working towards a brighter future for everyone with cystic fibrosis (CF) by funding cutting-edge research, driving up standards of care and supporting people with the condition and their loved ones every step of the way.
 
You will be joining a supportive and ambitious Fundraising department as we embark on a new fundraising strategy (2025-2029), with a renewed focus on growing our supporter numbers alongside growing our income, so we can increase our impact for people with cystic fibrosis. This is a key role in the Philanthropy and Corporate Partnerships team to help achieve its plans for growth. 
 
In this role, you will:

• Manage a portfolio of major donor relationships to raise substantial donations in line with agreed targets.
• Research, identify and cultivate new major donors and build strong ongoing relationships with existing supporters.
• Support the development and implementation of an effective major donor fundraising strategy to grow income over time.
• Organise and deliver high quality cultivation and stewardship events.
• Collaborate with other teams to identify projects that would be of interest to current and prospective major donors and prepare tailored proposals to secure funding.

 
We’re looking for someone with experience of fundraising from High-Net-Worth Individuals and a track record of securing high value gifts, with great communication and relationship building skills. You will have experience designing and delivering high impact stewardship programmes and an understanding of the legal, financial and ethical issues related to major gifts.
 
We offer a range of benefits including flexible working, 30 days annual leave plus bank holidays (this will be pro-rata for part time staff), opportunities for learning and development, pension, healthcare cash plan and more.
 
Closing date for completed applications is 12.00pm on 23 June 2025
 
First interviews expected week commencing 30 June 2025 
 
Second interviews expected week commencing 7 July 2025
 
We reserve the right to bring forward the closing date if necessary. Therefore, if you are interested in this role, please submit your application as early as possible.
 
Please note you will need to have the right to work in the UK before starting work with us and we will check this.
 
No agencies please.
 
How to apply
 
Please see the job description for more information on the role. If you would like to discuss the role before applying, please contact us.
 
To apply, please select ‘Apply Now’ and complete our application form and equal opportunities form.
 
The Cystic Fibrosis Trust aims to be an inclusive workplace where everyone belongs, can be themselves and achieve their full potential. We want to attract, develop, and retain staff with different backgrounds, experiences and perspectives; particularly people who have cystic fibrosis; people who identify as being from an ethnic minority group, as LGBTQ and people with disabilities.
 
It is our policy not to discriminate against any person because of their age, gender reassignment, being married or in a civil partnership, being pregnant or on maternity leave, disability (physical and mental), race including colour, nationality, ethnic or national origin, religion or belief (including lack of belief), sex, sexual orientation or union membership.
 
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