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21 March 2017

Papworth Hospital joins international fight against complex respiratory diseases

Papworth Hospital has joined forces with 900 other UK and European healthcare units to cooperate between specialists for the diagnosis and treatment of rare complex diseases.

The highly specialised healthcare units from 26 countries will begin collaboratively working together on a wide range of issues, from bone disorders to haematological diseases, from paediatric cancer to pulmonary hypertension as part of an expert collaborative group called the European Reference Network (ERN).

The newly established ERNs will join up the EU's finest expertise in these highly specialised areas and aims to benefit thousands of patients ever year.

Vytenis Andriukaitis, European Commissioner for Health and Food Safety, said: "I am particularly pleased to launch the European Reference Networks. As a doctor, I have too often been witness to tragic stories from patients with rare or complex diseases who were left in the dark, sometimes unable to find an accurate diagnosis and receive a treatment…These Networks will connect the considerable EU knowledge and expertise that is currently scattered between countries. I am very confident that ERNs can light the way for rare disease patients, leading them to potentially life-saving and life-changing breakthroughs".

Papworth is offering its expertise in complex respiratory diseases including cystic fibrosis, non-cystic fibrosis bronchiectasis, and pulmonary hypertension.

Dr Chris Johnson, Respiratory Consultant at Papworth Hospital said: "The challenge with rare diseases is that they affect no more than 5 in 10 000 people. However, taken together, they affect the daily lives of around 30 million people in the EU. The impact of such diseases on sufferers, their families and carers is substantial. Which is why we are delighted to be joining this exciting initiative for the benefit of Papworth’s patients and those across Europe."

You can find out more information on: http://ec.europa.eu/health/ern/toolkit_en


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