Brian Hayes MEP

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900 medical teams connecting across Europe will benefit Irish patients with rare diseases – Hayes

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900 medical teams connecting across Europe will benefit Irish patients with rare diseases – Hayes

Today, over 900 highly specialised units from 25 European Union countries and Norway will begin working together to the benefit for patients with rare diseases.

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“This is good news for Irish patients – many of whom are children, dealing with rare or low prevalence complex diseases,” said Fine Gael MEP, Brian Hayes.

“The European Reference Networks (ERNs), which launches today, begins a new phase of innovative and cross-border co-operation between specialists across Europe. They will work in conjunction with each other for the diagnosis and treatment of patients who are often left in the dark because they suffer from a rare condition.

“It is estimated that between 6-8% of the population in Europe has a rare disease and perhaps up to 300,000 Irish people during their lives.

“The impact of such diseases on sufferers, their families and carers is substantial and patients often go undiagnosed due to lack of scientific and medical knowledge or to difficulty in accessing expertise.

“24 thematic ERNs, gathering over 900 highly specialised healthcare units from 26 countries, will begin working together from today on a wide range of issues, from bone disorders to haematological diseases, from paediatric cancer to immunodeficiency.

“Joining up of EU’s best expertise on this scale should benefit thousands of Irish patients with diseases which require a particular concentration of highly specialised healthcare in medical domains where the expertise is rare.”

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