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Prospectus is proud to be partnering with our client, a small, specialist health charity dedicated to improving the lives of everyone affected by Dravet Syndrome.
Dravet Syndrome is a rare, life-long and life-limiting form of epilepsy that affects approximately one in every 15,000 people in the UK (around 2-4,000 people in total). It is a complex epilepsy syndrome so as well as severe, difficult-to-control seizures, people with Dravet Syndrome live with intellectual disability and a spectrum of associated difficulties including with speech and language, mobility, behaviours, eating and sleep. It is also common to have a co-diagnosis of autism and/or ADHD.
Founded in 2008 by a group of parents seeking support and information, DSUK has grown significantly over the past 17 years. Today, DSUK supports nearly 600 registered families across the UK and reaches over 2000 people in total, including parents and carers, siblings and bereaved families. As an organisation they deliver a range of impactful services aimed at improving the lives of beneficiaries through family support, professional education and medical research.
At a time of continued growth for the charity, and as medical advancements in the field continue (including clinical trials for the first gene therapies in rare epilepsy), DSUK are now looking to recruit a strategic, collaborative new CEO to help shape the next stage of their journey.
As the organisation’s new CEO, you will provide inspiring, values-driven leadership across the organisation, holding overall responsibility for the day-to-day operations and long-term growth. You will work closely with the Board of Trustees to develop and deliver the organisation’s next five-year strategy, steering organisational priorities, strengthening culture and ensuring the charity continues to grow, both in terms of scale and in impact. You will lead a small, dedicated, cross-functional team across family support, fundraising, communications and research, driving collaboration across all teams. You will also lead on impact and quality, embedding a culture of learning and continuous improvement. A key part of your role will involve developing and building strong relationships with a range of stakeholders, including families, professionals, researchers, pharmaceutical companies as well as other charities and funders. You will also represent DSUK at relevant conferences and sector events, both in the UK and occasionally internationally.
This is an exciting opportunity to shape the strategic direction of a small, specialist, growing organisation providing life-changing services. To apply for this role, you will be a confident, collaborative leader with significant senior leadership experience in the charity or not for profit sector (experience of working in a rare disease, health, disability or patient advocacy charity is desirable). You will have demonstrable experience of scaling an organisation, and navigating the complexity that growth brings. You will be a skilled communicator, confident at building relationships across health, care or community sectors. You will be resilient, adaptable and comfortable with the breadth and pace of working as a senior leader within a small charity.
If you are interested in applying for this exciting position, please submit your CV in the first instance. Should your experience be suitable, we will send you the full job description and will arrange for a call to fully brief you on the role.
At Prospectus we invest in your journey as a candidate and are committed to supporting you with your application. We welcome all candidates to apply, regardless of age, sex/gender, disability, race, religion, sexual orientation, marital status or pregnancy/maternity. If you have any disability and require reasonable adjustment/s to any part of the process then please contact Victoria Savva at Prospectus.
Please note, this will be home-based with regular travel across the UK (and occasional international travel). Working hours are Monday to Friday, 09:00–17:30 (however some flexibility for evenings and weekends is required).
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Job Description:
We are seeking a Health and Science Information Manager to lead the development of highquality health information and research communications for people affected by polycystic kidney disease (PKD). This is an exciting opportunity to shape how individuals access, understand and engage with trusted information throughout their journey, from diagnosis and day-to-day management, to the latest scientific and clinical research developments. In this role, you will oversee our extensive portfolio of patient information resources, ensuring all content is accurate, accessible, evidence-based and aligned with the PIF TICK quality standard. You will identify opportunities to create new and engaging resources that meet the evolving needs of the PKD community, using innovative approaches to improve how information is delivered across multiple channels. A key part of the role will be translating complex scientific and medical research into clear, compelling and patient-friendly content. You will help increase awareness of clinical research opportunities, communicate emerging developments in PKD science, and support greater understanding of how research can shape future treatments and care. We are looking for someone with strong strategic thinking, excellent editorial judgement, and the ability to communicate complex health and scientific information with clarity and empathy. This role would suit someone passionate about improving lives through trusted health information while helping connect people to the future of PKD research.
RESPONSIBILITIES:
Health information management and quality:
• Support the development and management of the PKD Charity’s health information portfolio across digital and print platforms
• Ensure all content meets PIF TICK standards, including robust processes for development, review, updating and governance
• Maintain oversight of the full information catalogue, ensuring content is accurate, consistent and aligned with current clinical guidance
• Work with clinicians, researchers, and people with lived experience to co-produce and review content Content development and user need
Content development and user need:
• Identify gaps in current provision and lead the development of new information resources
• Ensure content is clear, accessible, inclusive, and tailored to the needs of different audiences
• Use patient insight, feedback and data to continuously improve the quality and usability of information Innovation in information deliver.
Research and science communication:
• Explore new ways of delivering information beyond written formats (e.g. video, audio, webinars, digital tools)
• Improve how information is presented and accessed across the website and other platforms
• Stay up to date with best practice in health information and digital engagement Research and science communication
• Monitor developments in PKD research, treatments, and clinical trials
• Translate complex scientific and medical information into clear, engaging, and accurate content for non-specialist audiences
• Work with the Communications Manager and wider colleagues to plan integrated campaigns, awareness activity and audience engagement.
• Develop compelling stories, updates and features that bring research to life and show its relevance to people affected by PKD.
• Work with colleagues to increase awareness, understanding and interest in PKD research.
Building engagement with research:
• Help create a culture of interest and engagement in research across the PKD community
• Develop content that builds understanding of how research works and why it matters
• Support communication around studies and clinical trials to ensure patients feel informed.
Collaboration and stakeholder engagement
• Work collaboratively across the organisation to ensure consistency and alignment in messaging
• Build relationships with healthcare professionals, researchers, and external partners
• Involve patients and volunteers meaningfully in content development and review
Quality, monitoring and impact:
• Monitor the reach and effectiveness of health information and research communications
• Maintain accurate records of content review cycles and updates in line with PIF requirements
• Use insight and evaluation to continuously improve content and delivery
ABOUT YOU:
• Strong Content and Editorial Skills: You have experience producing high-quality written content, with excellent attention to detail and the ability to present complex topics clearly and accurately.
• Health or Science Communicator: You have experience working with health, medical or scientific information and can translate technical material into accessible language for public audiences.
• Collaborative Relationship Builder: You work well with others, build positive working relationships quickly, and enjoy partnering with colleagues across different functions to achieve shared goals.
• Confident Team Player: You are comfortable working closely with colleagues such as communications, fundraising, support and leadership teams, contributing ideas and supporting collective priorities.
• Strategic and Proactive: You can see the bigger picture, identify opportunities for improvement and take initiative to drive projects forward.
• Organised and Self-Motivated: You are comfortable managing your own workload, balancing priorities and delivering high-quality work in a remote setting.
• Values-Driven: You are motivated by improving lives, empowering patients with trusted information and supporting progress in PKD research.
HOW TO APPLY:
For information on how to apply, please read the job pack for further details.
The client requests no contact from agencies or media sales.