Cambridge Rare Disease Network(CamRARE) is a Cambridge-based charity dedicated to connecting, collaborating and supporting to improve outcomes for people impacted by rare diseases.
Do You Care About Rare? Join Us To Make A Difference
We are looking to appoint an enthusiastic trustee to strengthen our team. Join us to help us achieve our mission, share your expertise, develop new skills, get to know your community and be part of this exciting solution-focused organisation. CamRARE is experiencing a period of growth, expanding its employed team and taking several projects from the pilot phase to growth and sustainability. We will hold a strategy day in February 2025 to develop a 5 year plan for the charity and its work and are building our board's skills and experience in preparation.
We are seeking a healthcare professional with significant experience in the health and/or social care sector, ideally with expertise or lived experience of rare diseases. The role involves providing expert guidance on health and social care strategies, advocating for policy changes to support individuals with rare diseases, and building strong relationships with healthcare providers, policymakers, and stakeholders to further the charity’s mission. The ideal candidate will have a deep understanding of the challenges and opportunities either in a clinical, policy, or advocacy capacity, including knowledge of relevant health and social care policies and procedures affecting families with rare diseases.
Person Specification:
As a member of the board, you will have the opportunity to make a real difference to the lives of children, young people, adults and their families living with a broad range of different rare conditions by supporting CamRARE to develop and deliver an ambitious new strategy.
Interviews will be an informal Zoom chat with the Chair of Trustees and Managing Director
