First Rare Disease Collaborative Network on Refractory Coeliac Disease commissioned

  1. First Rare Disease Collaborative Network on Refractory Coeliac Disease commissioned

Refractory coeliac disease, a deadly form of the condition, has received its first dedicated support from NHS England with the setting up of a Rare Disease Collaborative Network (RDCN) in order to accelerate research and treatment into this life threatening condition.

The purpose of Rare Disease Collaborative Networks (RDCNs), which stem from the Government’s Strategy for Rare Diseases, is to learn more about the cause of rare diseases as well as to find the most effective treatments for patients, therefore increasing the chances of survival in those affected.
The RDCN will look to drive greater understanding of refractory coeliac disease and will be led by Professor David Sanders in Sheffield, working alongside Dr Jeremy Woodward at the collaborating centre in Cambridge.
Professor Sanders stated “The outlook for patients with refractory coeliac disease has been very poor with a 50% life expectancy post 5 years. The support from NHS England is wonderful as it will allow us an opportunity to collectively work on improving this awful situation for our patients.”