First Rare Disease Collaborative Network for refractory coeliac disease

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

RDCNs – which stem from the Government's Strategy for Rare Diseases – are dedicated to accelerating research and treatment for rare diseases. Their purpose is to learn more about the causes of rare diseases, as well as to find the most effective treatments for patients, thus increasing the survival chances of those affected.

The RDCN will be looking to drive improvements in patient outcomes through greater understanding of refractory coeliac disease, with dedicated support from NHS England.

Sheffield-based Professor David Sanders, chair of Coeliac UK’s Health Advisory Committee, will lead the new Network, working alongside Dr Jeremy Woodward at the collaborating centre in Cambridge.

"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," said Prof Sanders.

"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," commented Sarah Sleet, chief executive of Coeliac UK.

"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."

Coeliac disease is a relatively common rare disease, with 1 in 100 people in the UK experiencing the condition, and can be successfully treated with a gluten free diet for life.

However patients with refractory forms of the condition, which affects 2% to 5% of people with Coeliac disease, do not get better on a gluten free diet and are more likely to develop a specific type of cancer with fatal consequences, highlighting the significant unmet need in this area.

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