Supporting the

Neuroendocrine Cancer Community

Neuroendocrine Cancer UK Announces Partnership with RareCan

Jul 10, 2023

Neuroendocrine Cancer UK Announces Partnership with RareCan to help Facilitate Access to Clinical Trial Opportunities

Neuroendocrine Cancer UK is excited to announce a partnership with RareCan to help grow cohorts of people with neuroendocrine cancer, empowering them to share data and information about their cancer, and in turn, help drive research to enable improvements to treatment and outcomes in the future.

Each year in the UK, around 6,000 people are diagnosed with a neuroendocrine cancer – and the incidence is rising. Despite this, most healthcare professionals’ limited understanding of this type of cancer and its unique presentation can lead to people not getting the diagnosis, treatment and support they so crucially need. This is also reflected in the field of research, where there is limited support for research into NC.

RareCan is a digital health company, building a community of members who are willing to share information about their cancer. It gives power to patients building cohorts, so that researchers can find them in a keystroke. Established in 2020, RareCan also offers a suite of tools, co-designed by its members, to help support them and manage their lives as they live with their rare cancer.

RareCan makes it much easier for researchers to find people who are diagnosed with neuroendocrine cancer each year and gives this community the opportunity to say they are ready and willing to take part in research.

Piers Kotting, RareCan CEO says “We work with our members to help us build our partnerships and shape the tools that will give researchers the valuable information they need.  This is a wonderful example of a RareCan member introducing us to Neuroendocrine Cancer UK, and us establishing a partnership and way to work together going forward.   Working with the charity enables us to target specific rare neuroendocrine cancer types and share with researchers’ people who are actively ready to get involved, saving precious time and offering hope to many.”

Catherine Bouvier, CEO and co-Founder of Neuroendocrine UK agrees “Having a neuroendocrine cancer massively impacts quality of life for both individuals with a diagnosis and their families. People are impacted by the numerous symptoms, problems in getting a diagnosis, barriers and delays to key information about the disease as well as an often incurable, uncertain prognosis. Partnering with RareCan will enable our community to connect with researchers and help build the much-needed cohorts of very specific types of rare neuroendocrine cancers.  We are excited to see the impact RareCan can make as they continue to build relationships with researchers and ultimately speed up the time it gets someone with neuroendocrine cancer onto a clinical trial.”

Link to