Are you a social media whizz with a passion for telling powerful stories? Keen to progress in your career in public relations and digital communications while making a real impact in the charity sector? Join Dravet Syndrome UK as a Marketing and Communications Manager (home based,16 hours/week) and bring your creativity and energy to a role where you’ll help shape our online presence, generate meaningful media coverage, and connect communities through engaging content.
Reporting to the Head of Marketing and Communications and working with the Marketing, Communications and Fundraising Manager in this varied position, you’ll drive DSUK’s social media activity, creating and scheduling posts across our social media channels. Alongside engaging online audiences, you’ll be instrumental in our proactive PR work—writing press releases, pitching stories to key media, responding to journalist enquiries, and helping develop compelling family case studies for campaigns. As part of a passionate and supportive team, you’ll collaborate to measure the impact of our communications and marketing work.
If you’re ready to grow your career in communications and want to make a difference for families affected by Dravet syndrome, we want to hear from you.
As part of DSUK’s commitment to safeguarding, the postholder is expected to undertake an enhanced DBS check.
About Dravet Syndrome UK
Dravet Syndrome UK (DSUK) is a small independent UK charity dedicated to improving the lives of those affected by Dravet Syndrome. Dravet Syndrome is a rare neurological condition that affects around one in every 15,000 people in the UK. As well as experiencing severe, difficult-to-control seizures, children and adults with Dravet Syndrome have varying degrees of intellectual disability and a spectrum of associated conditions (known as ‘comorbidities’), which may include autism, ADHD, behaviours that challenge and difficulties with speech, mobility, eating and sleep.
The charity was founded in October 2008 by a small group of 30 families. Today, DSUK is a registered charity helping over 550 families with support, education, and research programmes, underpinned by a world-class Medical Advisory Board.
What you will bring
Essential
· Demonstrable experience in planning and delivering engaging and targeted social media content to build community, raise awareness and drive engagement.
· Hands-on experience managing websites (using WordPress), delivering e-marketing campaigns (e.g. Mailchimp or similar), and applying SEO principles and other techniques to optimise digital communications and online visibility.
· Demonstrable experience in media relations, including writing press releases, working with case studies and successfully pitching and responding to a range of media (online, press, radio, broadcast)
· Demonstrable experience of working in charity, patient advocacy or healthcare sectors
· Ability to deal with people at all levels with empathy, tact and credibility
· Excellent written and verbal communication skills, with an ability to distil large amounts of information and present it in engaging and innovative ways for a variety of audiences
· Demonstrable design skills and knowledge of desktop publishing software e.g. using Canva to create in-house designs for social media and our website
· Act as a brand guardian, ensuring external designers and agencies understand and apply our brand, visual identity, and corporate communications guidelines effectively
· Strong organisational and project management skills, with the ability to prioritise
· Be a self-starter and team player with experience of remote working, and able to work effectively with colleagues using remote technology (e.g. Zoom, Google meets, etc)
Desirable
· Membership of a professional body such as Chartered Institute of Public Relations and/or a commitment to continuous professional development
Why join Dravet Syndrome UK?
Join our dynamic and growing charity, where you'll thrive in an exciting and engaging environment. We are proud to be a family-oriented charity experiencing growth and fuelled by an ambitious plan for expansion. Our dedicated team is deeply connected to our core audience, and their motivation stems from witnessing our impact on people's lives. Join us today and contribute to making a lasting difference in the lives of those we support.
The closing date for applications is Wednesday, 24 September 2025, with shortlisting interviews taking place in early October with job to commence November 2025.
Our commitment to diversity
As part of our ambitions to improve equality and diversity, we welcome applications for this role from those who identify under any of the protected characteristics under the Equality Act 2010, which include race, age, disability, sex, religion or belief, sexual orientation, gender reassignment, marriage & civil partnership, and pregnancy and maternity.
Registered Charity 
6 - 10
The client requests no contact from agencies or media sales.
Thank you!
Job Title: Online Engagement and Inclusion Lead (Young People’s Services)
Organisation: Kids
Location: Remote work with occasional travel to London for in-person meeting
Hours: 36 hours per week
Contract: Fixed term for 2 years
Salary- £31,000 - £33,000
Purpose
This role leads the coordination of Kids’ online engagement and digital inclusion work for young people with SEND, including information provision, participation, and wellbeing support. You will deliver a two-year Online Wellbeing and Resilience Support Programme, including identifying and engaging digitally excluded young people to help them access vital digital tools and services. The role also drives collaboration across the Digital Services Consortium (a collaboration of 12 children’s charities), embedding shared learning, outcome measurement, and inclusive digital practices across Kids, and will create new capacity to work with young people to scope and deploy online campaigning activity.
Responsibilities
- To lead and coordinate Kids’ online engagement and inclusion work for young people with SEND. This includes Kids’ online information provision; voice/ participation and wellbeing work.
- To develop and deliver Kids’ two-year digital inclusion programme, Online Wellbeing and Resilience Support Programme* to ensure reach and impact is maximised.
- To work with the Digital Services Consortium Driving Digital Inclusion members on shared digital project outcome measures and community of practice, ensuring learnings and online engagement and digital inclusion principles are captured, shared and built into the organisation.
- To identify and recruit (working closely with colleagues from services across Kids) digitally excluded young people to the digital inclusion programme so they can become digitally included and access much needed support and guidance.
- To establish a holistic and joined up approach to Young People’s online engagement and digital inclusion with Kids.
- To create new capacity to work across all services and teams, and with a range of young people, to scope and deploy online campaigning capabilities in line with Kids’ Speak Up and wider national and local influencing work.
Key to your success in the role will be:
- Ensuring an audience-led approach, leading and championing an important collaborative way of working across Kids existing young people's services.
- Confidently working within the Kids digital infrastructure and context – understanding where we are at on our digital journey, building excellent problem-solving relationships with marketing, IT, change team and young people’s services colleagues.
- Helping to embed digital inclusion practices across the organisation.
- Applying strong digital, data and analytical skills to enable you to baseline, track and measure progress.
- Demonstrating excellent attention to detail whilst being flexible to adapt to the needs of a new programme.
- Influencing the broader Kids service teams to identify and engage digitally excluded young people.
- Centering the voices and needs of young people with SEND.
Person Specification
Experience
- Proven experience working in digital engagement initiatives, ideally with young people or vulnerable groups.
- Involvement in programmes that promote digital inclusion and wellbeing.
- Experience in outcome measurement, impact reporting, and using data to inform practice.
Desirable
- Experience in co-producing content or services with young people, including those with SEND.
Skills
- Strong project management skills, with the ability to coordinate multiple workstreams and meet deadlines.
- Excellent communication skills, both written and verbal, tailored to diverse audiences including young people, professionals, and stakeholders.
- Skilled in using digital tools and platforms to deliver services and measure engagement.
- Ability to work collaboratively across teams and build strong internal and external relationships.
Knowledge
- Knowledge of safeguarding principles and practices in online environments.
- Awareness of current trends in digital engagement and youth participation.
- Knowledge of inclusive digital design and accessibility standards.
- Understanding of digital inclusion principles and the barriers faced by digitally excluded young people.
Personal Attributes
- Passionate about inclusion, equity, and empowering young people.
- Committed to co-production and user-led design.
- Growth mindset and proactive approach to problem-solving.
- Committed to continuous learning and sharing best practices.
- Flexible and adaptable, with a collaborative mindset.
*About the funded programme
Kids Online Wellbeing and Resilience Support Programme will help young people with SEND (aged 13 – 25 years) build resilience, positive self-regard and meaningful connections.
Our goal is to reduce isolation and protect mental health through a supportive, inclusive digital environment. We’ll begin by consulting directly with young people to understand what they need most. Together, we’ll co-create new online content and resources that truly reflect their voices and experiences.
What the Programme Offers:
- Online information with resources codesigned with young people with SEND.
- A series of interactive webinars and guided online activities.
- Free devices and data to improve access to those who need it most, plus the support to ensure everyone can participate.
We will reach over 1,800 young people over the two year funded period.
Partner Acknowledgements
Thanks to National Lottery players, the Digital Services Consortium (DSC) has received over £1.5 million over two years from The National Lottery Community Fund, the largest community funder in the UK. The DSC has also received a grant of £400,000 from BBC Children in Need for two years to provide digital support for disabled or seriously ill children and young people and their family members across the UK. Virgin Media O2 and Vodafone have generously donated devices and data through the Good Things Foundation National Databank and Device Bank which will help address affordability barriers.
The client requests no contact from agencies or media sales.