Cambridge Rare Disease Network

Who we are

At Cambridge Rare Disease Network (CamRARE), we are dedicated to building a thriving, inclusive community for the 3.5 million people in the UK affected by rare and undiagnosed conditions. For over a decade, we’ve brought together patients, families, researchers, clinicians, industry, and policymakers to improve understanding, accelerate research, and create meaningful change in the rare disease landscape.

Who We Are

Founded in Cambridge in 2015, CamRARE is a small but ambitious charity with a big impact. We deliver a unique blend of community support, education, advocacy, and cross-sector collaboration. Our work includes:

• Supporting families and young people through our Unique Feet community programme, providing accessible activities, connection, and respite for those navigating complex rare conditions.

• Championing the patient voice by enabling meaningful involvement, engagement, and participation (PPIEP) across research, healthcare, and innovation projects.

• Driving progress and partnerships through initiatives like the Rare Disease Research Network (RDRN), connecting patient ideas with researchers, industry, and funders to spark new research.

• Hosting flagship events, including RAREsummit, bringing together hundreds of stakeholders to share knowledge, inspire collaboration, and shape future solutions.

• Building awareness and community action through campaigns, education, and our Companies Forum, ensuring rare disease families are seen, heard, and supported.

We are a passionate, highly collaborative team with strong values, a culture of openness, and a commitment to amplifying the voices of those too often overlooked. Joining CamRARE means being part of a purpose-driven organisation where your work genuinely helps improve lives and influence national conversations around rare conditions.

Our culture and values

We are a passionate, highly collaborative team with strong values, a culture of openness, and a commitment to amplifying the voices of those too often overlooked. Joining CamRARE means being part of a purpose-driven organisation where your work genuinely helps improve lives and influence national conversations around rare conditions..

At Cambridge Rare Disease Network (CamRARE), our culture is shaped by compassion, collaboration, and a deep commitment to making a meaningful difference for people living with rare and undiagnosed conditions.

We are a small, values-driven team with a big mission, and we work in a way that reflects the needs of the community we serve:

People-first
We place individuals, families, and their lived experiences at the heart of every decision. We listen, adapt, and work with empathy, recognising the diversity and complexity of rare conditions.

Collaborative by design
Progress in the rare disease world relies on partnership. We actively bring people together across patient communities, research, healthcare, industry, and policy to spark innovation and build solutions that no one sector can achieve alone. We give our community opportunities and platforms to meet people they wouldn't have met anywhere else.

Creative and curious
We champion fresh ideas, support experimentation, and embrace learning. Our team is encouraged to think boldly, stay curious, and seek new ways to tackle entrenched challenges.

Inclusive and equitable
We are recognised as a disability confident employer and we're committed to creating safe, welcoming spaces where every voice is valued. We work to remove barriers, challenge inequity, and ensure all communities have opportunities to participate. We recognise that sometimes we need to really think outside the box to ensure our whole community has the chance to share what matters most to them. 

Impact-driven
We focus on meaningful outcomes that genuinely improve lives. Whether it’s community support, research collaboration, or awareness-raising, we measure our success by the positive change we help create. Supportive and flexible
We foster a culture of trust, wellbeing, and balance. As a small charity, we are agile, supportive, and mindful of creating a working environment where staff can thrive professionally and personally.

At CamRARE, you’ll join a team that cares deeply about its mission, its people, and the families and individuals whose voices inspire everything we do.

Equality, diversity and inclusion policy

At CamRARE, we are committed to creating a fair, inclusive, and welcoming workplace. We celebrate diversity and value the unique perspectives of all staff, volunteers, and the communities we serve.

We actively oppose discrimination, provide equal opportunities in recruitment and development, and adapt working practices to ensure accessibility for everyone. Inclusion is central to our culture and vital to achieving our mission to support people affected by rare and undiagnosed conditions.