First Rare Disease Collaborative Network on refractory coeliac disease

20 November 2018

We are pleased to report that the very first Rare Disease Collaborative Network (RDCN) on refractory coeliac disease has been commissioned, enabling dedicated support from NHS England to accelerate research and treatment into this life threatening condition.

Whilst coeliac disease is relatively common with 1 in 100 people in the UK experiencing the condition and can be successfully treated with a gluten free diet for life. Refractory coeliac disease affects 2 to 5% of these patients. They do not get better on a gluten free diet and are more likely to develop a specific type of cancer with fatal consequences.

Prof David Sanders, from Sheffield and Chair of Coeliac UK’s Health Advisory Committee will lead the Network, working alongside Dr Jeremy Woodward at the collaborating centre in Cambridge. The RDCN will be looking to drive improvements in patient outcomes through greater understanding of refractory coeliac disease.

RDCNs have been set up by the Government recently as part of its Strategy for Rare Diseases with a vision to lead to improved outcomes for patients with very rare diseases which have a prevalence of < 1 in 10,000 of the population.

Sarah Sleet, chief executive of Coeliac UK said: “This is the first time refractory coeliac disease will receive the focus from NHS England on new treatments and care that is so desperately needed. Now that we have this crucial recognition, we are working through our Research Fund to ensure we can make the investment and capitalise on this development and help improve the future for patients suffering with debilitating symptoms and we are delighted that Prof Sanders and Dr Woodward will be leading this collaborative network.”

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