Overview
Senior Patient and Scientific Engagement Officer — Beacon for Rare Diseases is seeking a candidate to deliver ambitious projects that put patients at the heart of translational research. The role focuses on patient involvement and scientific communication, building collaborations between patients, researchers, and other stakeholders. You will provide operational support and subject matter expertise to ensure projects reflect the real-world needs of the rare disease community. Core initiatives include REMEDi4ALL, a European-wide drug repurposing platform with over 25 partner organisations, and the LifeArc Translational Research Centres for Rare Disease (LifeArc TrC4RD), a UK-wide partnership. You will work directly with partners across these consortia, including patient group leaders, patient representatives, academic researchers, and clinical trialists, acting as a vital interface between patients and researchers to coordinate activities and embed patient perspectives throughout the work. While these are the main focus, you will also support other initiatives across the charity to advance scientific understanding of rare diseases and strengthen patient involvement in research.
This is a varied role offering opportunities to apply and develop expertise across patient and public involvement, scientific content development, training, and stakeholder engagement. We are looking for someone with a strong grasp of both scientific and patient landscapes who can balance attention to detail with big-picture thinking and work confidently in highly collaborative settings with multiple partner organisations. This role offers a unique opportunity to contribute to advancing rare disease research and ensure patients’ voices drive progress across the UK and Europe.
See our full job description for more information on REMEDi4ALL and the LifeArc TrC4RD
Main duties and responsibilities
Your main responsibilities will span project delivery, stakeholder engagement, and patient-centred scientific support. In this role, you will:
* Support the delivery of Beacon’s work within REMEDi4ALL and the LifeArc TrC4RD, collaborating with partners across these consortia to coordinate activities and ensure timely delivery of shared goals.
* Assist in the preparation of project materials, reports, and updates for consortium meetings and communications.
* Write, review, and refine accessible, patient-facing materials that explain complex scientific concepts and research projects clearly.
* Help design and deliver patient engagement strategies for major collaborative projects, ensuring patient perspectives are embedded throughout.
* Support and liaise with REMEDi4ALL Patient Champions and the LifeArc Patient Engagement Group, including coordinating mentorship, facilitating input into project teams, and managing communications.
* Build and maintain strong working relationships with patient advocates, researchers, funders, and partner organisations, ensuring clear communication and effective collaboration.
* Contribute to the planning and delivery of multi-stakeholder meetings, workshops, and webinars that bring together patients, researchers, and other partners to discuss research priorities and approaches.
* Support the creation and delivery of training materials, sessions, and talks for patient groups, researchers, and other stakeholders on topics such as patient and public involvement (PPIE) and rare disease research.
* Participate in project discussions to understand current patient engagement and provide input or signposting to improve engagement and support.
* Represent Beacon and its work at consortium meetings, external conferences, and events, both as a delegate and, where appropriate, as a speaker.
* Support other Beacon-led projects as required, particularly those focused on advancing patient knowledge, engagement, and scientific understanding.
* Provide hands-on support for the on-the-day delivery of Beacon events, training programmes, and other charity activities.
Person specification
This is a mid-to-senior level role. Candidates should have professional experience in scientific engagement, patient involvement, or research coordination, and be ready to contribute confidently to collaborative consortium projects with external partners.
* Relevant professional experience (e.g., life sciences, medical communication, translational research, or patient engagement), ideally with a scientific qualification.
* Experience in patient and public involvement or patient engagement within research, ideally in health contexts.
* Strong understanding of scientific processes, translational research, or clinical research, with the ability to communicate complex concepts clearly to non-specialist audiences.
* Ability to work effectively within multi-partner or consortium projects, collaborating with external organisations.
* Confidence in liaising with a wide range of stakeholders, including patients, researchers, funders, and partner organisations.
* Experience developing accessible, patient-centred materials, training, or communications.
* Excellent organisational skills, with the ability to manage multiple tasks and deadlines while maintaining attention to detail.
* Strong interpersonal skills and ability to build relationships across diverse groups.
* Ability to work independently and proactively, while contributing effectively as part of a team.
* Commitment to patient-centred research and improving outcomes for the rare disease community.
* Flexibility to travel for in-person meetings, workshops, and events within the UK and internationally multiple times a year.
* Experience supporting or delivering training sessions, workshops, or webinars for patient or professional audiences.
* Familiarity with drug repurposing, translational research, or rare disease research environments.
* Experience managing or contributing to multi-stakeholder research projects.
* Experience working or volunteering in the charity or not-for-profit sector.
* An understanding of rare diseases, health charities, or small-organisation dynamics.
Working at Beacon
Beacon is a small, tight-knit team with a friendly atmosphere and a strong commitment to beneficiaries. We offer flexible working practices, including hybrid working (approximately 50% home and 50% office) and flexible hours. We recognise the value of in-person collaboration for teamwork and staff development and maintain this as a core part of how we work. After onboarding, this role is based in the office for around 2–3 days a week on average (subject to team needs and occasional variations).
Benefits
* £30,000 - £32,000 salary depending on experience
* 25 days holiday, plus bank holidays and Christmas to New Year closure
* Flexible working practices including hybrid working and flexitime
* Time off in lieu to support work/life balance
* Annual training budget to support personal and professional development
* A close-knit and friendly small team environment
* Opportunities to meet with beneficiaries and expand your professional network
* Employee Assistance Programme (EAP) including mental health support, 24/7 GP service, discounted gym membership, shopping savings and more
Application process
Please email an up-to-date CV and cover letter addressed to Mary Rose Roberts (Chief Operating Officer) at recruitment@rarebeacon.org by 9am, Monday 6 October. Your cover letter should outline your interest in the role and working at Beacon, as well as any relevant skills and experience. Use the subject line: Your Name – Senior Patient and Scientific Engagement Officer Application.
Generic applications or those without a cover letter will not be considered. If you wish to apply via an alternative method or format, please contact the recruitment email above.
Shortlisted candidates will be contacted for a phone interview, with final interviews anticipated to take place in mid-late October at our Cambridge office.
If you have any questions, please contact the email above. All applicants must have the right to work in the UK. We are unable to sponsor UK visas.
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