Beacon: for Rare Diseases

Join Beacon to drive projects that place patients at the heart of translational research, shaping progress and improving outcomes with and for rare disease communities. OVERVIEW OF THE ROLE Beacon, now in its second decade of operation, has experienced substantial growth over the last three years, including an organisational rebrand and expansion into international projects. We are now recruiting a Senior Patient and Scientific Engagement Officer to play a central role in delivering ambitious projects that put patients at the heart of translational research. This role sits at the crossroads of patient involvement and scientific communication, building meaningful collaborations between patients, researchers, and other stakeholders. You ll provide essential operational support and subject expertise to ensure projects run smoothly and reflect the real-world needs of the rare disease community. You will contribute primarily to two of Beacon s major collaborative initiatives: 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. In this role, you will work directly and regularly with partners across these consortia, encompassing patient group leaders, patient representatives, academic researchers, clinical trialists, and beyond. You will act as a vital interface between patients and researchers in both projects, coordinating activities, facilitating collaboration, and embedding patient perspectives throughout the work. While these will be your main focus, you will also support other initiatives across the charity, particularly those aimed at advancing scientific understanding of rare diseases and strengthening patient involvement in research. This is a varied position offering the chance to apply and further develop your expertise across areas such as patient and public involvement, scientific content development, training, and stakeholder engagement. We are looking for someone with a strong grasp of both the scientific and patient landscapes, who can balance attention to detail with big-picture awareness and work confidently in highly collaborative settings with multiple partner organisations. This role offers a unique opportunity to make a tangible contribution to advancing rare disease research and ensuring 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 aspects of 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 directly 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. We are looking for someone with a strong commitment to patient-centric approaches, who is willing to advocate for patients perspectives and priorities, while also navigating the need for compromise and collaboration across multiple organisations. Essential Relevant professional experience (e.g., life sciences, medical communication, translational research, or patient engagement), ideally accompanied by 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 confidence in building 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. Desirable 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 strong commitment to our beneficiaries. We aim to give all employees opportunities to pursue their interests, develop their skills, and shape their career path. We offer flexible working practices to help our staff balance their personal and professional lives, including hybrid working (50% split between home and office working) and flexible hours. We also recognise the substantial benefits of in-person collaboration and communication for the organisation, team morale, and for individual staff development, and are committed to maintaining this as a core part of how we work. After the initial in-person onboarding period, we d like this role to be based in the office for around 2 3 days a week on average (though not necessarily every single week) to support effective teamwork, strong communication, and smooth daily operations. BENEFITS 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 appropriate work/life balance 5% pension contribution Annual training budget to support personal and professional development A close knit and friendly small team environment Frequent opportunities to meet with beneficiaries and expand your professional network Employee Assistance Programme (EAP) including access to mental health support, 24/7 GP service, discounted gym membership, shopping savings and more