A European-wide project which pulls together neuromuscular specialists from across the continent was officially launched last week.
The group will be co-ordinated by the UK’s own Professor Kate Bushby, who works at Newcastle’s John Walton Muscular Dystrophy Research Centre.
The European Reference Network (ERN) will also receive input from the leading British charity Muscular Dystrophy UK.
Nic Bungay, from the charity, said: “We are very pleased to be able to support and influence this major new international initiative.
“Families and individuals in the UK affected with muscle-wasting conditions should have access to the very best possible care so it is important that we work in partnership with our European neighbours to learn what that best care looks like elsewhere.
“Muscular Dystrophy UK will be working hard to ensure that the voices of people living with neuromuscular conditions are heard in the ERN and that our best practice education resources are shared with colleagues across Europe.”
The network will link together hundreds of specialist centres in different countries and pool together their wide-ranging expertise.
It is hoped that working on this level will help the diagnosis and treatment of a number of debilitating conditions.
Part of the problem is that the EU defines a rare disease as any condition affecting less than one in every 2,000 people and a large number of neuromuscular conditions fall into this category.
This means that people with the specialist skills to help patients are often few and far between, which is why bringing experts from different countries together may prove so invaluable.
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