RDCN – The Rare Disease Collaborative Network

NHS England has set up a Rare Disease Collaborative Network (RDCN) to improve care for people with hereditary polyposis syndromes — including FAP, Peutz-Jeghers syndrome, Juvenile Polyposis syndrome, and other rare inherited conditions that cause polyps to form in the digestive system.

There are currently seven specialist centres across the UK that form this network. Each centre has an experienced team who look after patients with these conditions, run regular multidisciplinary team (MDT) meetings, and work together on research and treatment improvements. The centres also meet once a month for a national MDT, where experts share knowledge and discuss complex cases to make sure patients get the best care possible.

A new national guideline recommends that all patients and families with a hereditary polyposis syndrome should be cared for by one of these specialist centres. If someone is receiving care locally, their doctors should still connect with a specialist centre for advice on important decisions — such as surgery options, polyp management, and screening for related health issues.

If you or someone you care for is affected by one of these conditions, it’s a good idea to check that your care team is linked with one of the RDCN centres. This helps ensure your treatment plan is based on the latest expertise and national guidance.

Please find contact details for your closest centre below.