Managing Director at Cambridge Rare Disease Network (CamRARE) and Co-Lead at Rare Disease Research Network (RDRN)
Cambridge Rare Disease Network is #Hiring a dynamic, visionary MD!
As our Managing Director and founding member prepares for her planned retirement, Cambridge Rare Disease Network (CamRARE) is seeking a dynamic and visionary new leader to guide the charity into its next decade. This is a pivotal leadership role, responsible for driving forward our strategic vision and future growth as CamRARE continues to deliver meaningful impact for the rare community.
You will inspire and empower a talented team of staff, trustees, volunteers, families and partners, while building strong connections across our networks to expand our reach, visibility, and influence. As an energetic and forward-thinking leader, you will bring the drive and expertise to strengthen partnerships, grow income through innovative fundraising and strategic collaborations, and champion CamRARE as a trusted voice within the rare community and beyond.
Why choose a career at Cambridge Rare Disease Network?
#purpose – We’re on a mission to make life with a rare condition easier through community, collaboration and connections. Your role is to lead this mission to directly contribute to a better future for those living with rare conditions.
#growth – We’re a small, ambitious team where you’ll have opportunities to shape and grow with us. You will use your experience and knowledge to make a measurable impact.
#diversity and inclusion– We value the diversity and unique insights each person brings. We actively welcome applications from candidates of all backgrounds and lived experiences.
About Cambridge Rare Disease Network
There are over 10,000 rare conditions that affect 400 million people globally. Receiving a diagnosis can take years. Most rare diseases have no treatment. Coordination of care is often poor.
We’re on a mission to make life easier for those affected—uniting individuals, families, patient groups, researchers, industry, clinicians and policymakers to accelerate solutions and improve lives. Through knowledge-sharing, collaboration, and creativity, we aim to make the journey smoother for people living with rare and undiagnosed conditions and their families.
* CamRARE connects patients, advocates, research experts, and leaders—catalysing action to drive solutions and create lasting change
* Connects knowledge with lived experience to transform the journey toward better diagnosis, treatment, and support for individuals and their families
* Connects, educates, and supports the rare disease community - locally and globally - to improve outcomes and transform lives
Leading CamRARE
As Managing Director, you will provide strategic leadership for the charity, oversee governance and operations, develop and execute the strategy set by the Board of Trustees, and build key external partnerships. This role leads fundraising efforts and develops high-level external stakeholder relationships with Government bodies, including healthcare organisations/departments, Industry, patient and charity organisations, and Research Institutions involved in rare disease. This is a key role to build, strengthen and nurture the charity's connection with the rare disease community, empowering them and fostering an inclusive and supportive network.
We’re looking for someone who:
* Has a deep commitment to improving the lives of individuals and their families living with rare conditions.
* Has proven experience of 10+ yearsin a senior leadership role with a track record of delivering impact.
* Has experience in strategic planning, organisational development, and leading change.
* Brings creativity, adaptability and a “can-do” attitude.
* Has experience in income generation and managing stakeholder relationships.Has strong team management skills with a focus on development and building an inclusive workplace culture.
* Has experience in financial management and resource allocation.
* Has excellent interpersonal and communication skills, with the ability to influence and inspire.
* Has sound knowledge of issues affecting the voluntary sector
* Enjoys working independently, hands‑on as part of a team and effectively with remote teams
* Experience in and enjoys networking and partnership building, can communicate effectively with a broad range of people
* Experienced in business delivery aligned to financial targets, core objectives and strategy implementation
* Has experience leading events and campaigns
What’s on offer:
* Salary: £54,000 per annum
* Contract: Full-time, 37.5 hrs/week
* Location: Remote, with regular travel within Cambridge and London
* Benefits: 25 days holiday + 8 bank holidays, flexible working, 6% pension contributions
* Development: Opportunities for personal learning, networking and professional growth
How to apply
To apply, please contact Helen Boyd, Operations Manager – helen@camraredisease.org to request the full role description and the application form. Please send these along with your CV to Helen by the deadline of 5pm, Thursday 4 th December 2025
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