The rare disease challenge

Cambridge Rare Disease Network


Rare diseases, defined as affecting fewer than one in 2,000 individuals, are still poorly understood. Scientific research is limited, diagnosis is slow, co-ordination of care fractured and treatments scarce. Accelerating progress requires a cross-sector, collaborative approach that capitalises on recent advances in medicine and genetics.

Cambridge Rare Disease Network (CRDN) is building a platform for change: an infrastructure that accelerates solution-focused dialogue between patients, advocates, experts and industry leaders. 

The rare disease challenge

One in 17 people will develop a rare disease at some point in their lives. But the rarity of each condition means individuals are often seen in isolation which slows down the development of evidence-based care and treatment. Progress depends heavily on facilitating and nurturing the right connections between patient groups, healthcare, industry and research stakeholders.

Between 2019 – 2022, EET supported CRDN to refine its focus, increase operational capacity and develop more robust systems for tracking and demonstrating impact. With a strengthened public profile, CRDN increased and diversified their revenue stream during that time to sustain growing operations and marketing.

Flagship events like RAREfest, RAREsummit and Companies Forum started to attract a diverse and relevant audience and an increasing number of funded partnerships between drug companies and patient groups.

“EET has supported CRDN to refine, diversify and amplify its core messaging to speak with purpose and impact to our broad range of stakeholders.”

Jo Balfour, Managing Director, Cambridge Rare Disease Network

A hub for innovation

In 2021 – 2022, CRDN launched new partnerships with the Eastern Academic Health Science Network funded by NHS, health start-ups and business innovation hubs to hold innovation challenges that address top issues of people living with rare conditions.

CRDN have also partnered with a major clinical trials company as a social innovation charity partner, delivering bespoke chargeable services to industry.

Recognised national voice

CRDN’s collaborative research publications have been referenced and quoted in the 2021 UK Government Rare Disease Framework paper and influenced the action plan for England published in spring 2022.

CRDN continue to build on their strengthened public profile as a trusted advocate who provides a unique voice for and access to patient lived expertise. The team are constantly improving how they collect data, track interactions, nurture collaborations and provide tailored support to rare disease stakeholders.

Impact at a glance

  • New partnership with NHS funded Eastern AHSN and published research that influenced England’s first Rare Diseases Action Plan
  • Practical solutions for top issues of patient groups like a rare disease patient passport
  • Doubled sponsorship for flagship events and received funding from Local Government for the first time