Director, Rare Disease Network

Job Title: Director, Rare Disease Network Location: London Job Type: Permanent with a hybrid working environment

Agencies: We will only work with recruitment partners on our preferred supplier list and will not engage with speculative CVs submitted.

Are you passionate about making life science life changing and delivering impact for patients? We want to hear from you.

Embedded into LifeArc's Ecosystem department, this new role will lead the delivery of rare disease portfolios and programmes, with the primary focus being on the LifeArc Rare Therapies Launch Pad (LifeArc RTLP), a high-profile, strategic initiative aimed at accelerating development, delivery and access to rare disease individualised therapies.

The successful candidate will contribute to the development and execution of the Ecosystem rare disease strategy, working in close collaboration with other leaders across the organisation. The role provides leadership across complex, multi-partner portfolios, with a focus on driving high-profile, external, major rare disease ecosystem programmes and strategic partnerships, spanning rare disease therapeutic development, clinical trial delivery, regulation, market access, policy and data.

The role will ensure delivery is coordinated, high quality, and aligned to organisational priorities and LifeArc's capabilities embedded in the preclinical and clinical departments. Through strong scientific, stakeholder, and delivery leadership, the role supports translation of strategy into impactful outcomes for people living with rare diseases.

• Contributing to the development of the Ecosystem rare disease strategy with a focus on the LifeArc RTLP programme, translating strategic direction into clear priorities and delivery plans
• Leading the delivery of the LifeArc RTLP and other complex portfolios and programmes, as relevant, ensuring timelines, quality standards, milestones, and outputs are achieved
• Providing portfolio-level leadership, aligning activity across multiple programmes, workstreams, and partners
• Overseeing and assuring portfolio and programme performance, proactively managing risks, dependencies, and trade-offs
• Developing and overseeing portfolio plans, budgets, and resource allocation, ensuring the effective use of internal and external capabilities
• Identifying and developing new opportunities and collaborations, preparing proposals and business cases to enable impact
• Building and maintaining strong external partnerships, acting as a credible ambassador and representing LifeArc in relevant forums
• Providing effective governance and decision support, ensuring clear reporting, performance tracking, and engagement with decision-making bodies
• Leading and developing teams through line and/or matrix leadership, fostering a high-performing and collaborative environment
• Working closely with other LifeArc leaders across functions and departments to ensure alignment and integration across the Ecosystem, Clinical and Preclinical portfolios particularly in relation to the strategic position and operational delivery of the LifeArc RTLP.
• Driving continuous improvement of delivery, strengthening processes, ways of working, and portfolio effectiveness
• Acting as a role model for LifeArc's principles and behaviour

• Extensive experience in biomedical, life sciences, or translational and clinical research environments, including experience of driving and influencing innovation in research policy
• Demonstrated ability to lead complex portfolios and multi-partner programmes relevant to rare disease
• Experience in portfolio planning, performance management, delivery oversight, and governance of complex large, multi-partners programmes
• Strong experience of matrix and team leadership, including line management
• Proven ability to build and sustain strategic partnerships, internally and externally
• Strong scientific, strategic, and analytical capability, with the ability to operate at both detail and portfolio level
• Excellent communication, influencing, and stakeholder engagement skills, including with senior leaders and in research policy
• Experience of rare disease research and innovation, in the context of therapeutic development and market access, is highly desirable
• Experience of research delivery in the NHS setting is highly desirable

• PhD, MD, MSc (or equivalent) in a scientific discipline of relevance (biomedical, life sciences, or related discipline)

• Ability to translate strategy into execution, aligning priorities, resources, and delivery
• Understanding of research funding and sustainability models, with relevant knowledge of this applied to rare disease being an advantage
• Highly effective leadership and influence in matrix environments
• Advanced planning, prioritisation, and organisational skills
• Strong risk management, judgement, and decision-making capability
• Clear and confident communication across scientific, operational, strategic and senior stakeholder audiences, including government and civil service representatives
• High level of scientific credibility and critical thinking
• Adaptable, resilient, and able to operate in dynamic, complex environments

LifeArc is a not-for-profit life science organisation, leading the way for change in rare diseases in the UK and supporting promising initiatives in global health. We seek out research in areas of unmet need that has great potential, providing support to help it become breakthroughs that change lives.

The Ecosystem department, where this role will be based, focuses on strengthening the life science ecosystem by forming and facilitating effective partnerships, expanding capabilities, scaling capacity for research and innovation, shaping national and global conversations, and addressing system barriers through innovative pathways to innovation and adoption.

Focused on finding life changing solutions for underserved patients, our people thrive in an inclusive and supportive environment that prioritises their health and wellbeing. Our multidisciplinary approach guarantees our people growth opportunities, while our culture of innovation and collaboration drives the impact we make delivering on our purpose of 'putting patients at the centre of everything we do'.

LifeArc is committed to making our recruitment practices as inclusive as possible and developing a culture that values differences. As a Disability Confident Employer, we guarantee an interview to candidates with a disability or long-term health condition who meet the essential criteria for the role.

Please note that in certain situations, such as high volumes of applications, it may not be practical to interview all eligible candidates. In these cases, we may need to select those who best meet the essential criteria. (At LifeArc, the Disability Confident Scheme's 'minimum criteria' is referred to as 'essential criteria')

Salary will be determined by qualifications and experience along with other exceptional benefits. Because we understand everyone has different requirements, our flexible benefits allow you to choose those which are important to you. Our pension scheme offers employer contributions of up to 12%, private health insurance, and annual leave of 31 days PLUS bank holidays.

Don't meet every single requirement? Studies have shown that women and people from minority ethnic backgrounds, for example, are less likely to apply to jobs unless they meet every single qualification. At LifeArc we are dedicated to building a diverse, inclusive, and authentic workplace, so whatever your background or lived experience, if you're excited about this role but your experience doesn't align perfectly with every qualification in the job description, we encourage you to apply anyway. Our top priority is finding the best candidate, and you may be just right for this or other roles.

We all have potential. At LifeArc, you'll discover what you can really do with it.