Genetic Alliance UK is running a campaign to ensure UK hospitals can continue to be part of networks across Europe working to treat those affected by rare and complex conditions.
These connected hospitals are known as European Reference Networks (ERNs). ERNs were developed by the EU to work together to tackle rare and complex conditions. Not only do they help provide diagnosis and treatment, they can facilitate large clinical studies to improve our understanding of rare conditions. They can help with the development of new medicines and medical devices, and provide training and knowledge exchange.
Each ERN is grouped to cover a range of conditions, for example, EpiCARE is the ERN that diagnoses, treats and cares for those affected by rare and complex epilepsies. This ERN brings together 28 expert hospitals in 13 European countries. It offers individuals and families the best care and expertise available. Most people don’t realise that their hospital is part of one, or more, ERN(s).
In fact, many of the major children’s hospitals in the UK are connected to ERNs. Great Ormond Street Hospital is a founding member of the EpiCARE ERN, coordinating all the hospitals in the network – some as close as France, others as far as Finland.
The UK is leaving the EU and this means that UK hospitals may no longer be able to take part in ERNs. Currently there are 24 ERNs and the UK is involved in 23. Until recently, the UK was leading six of these networks, however, in preparation for the UK’s departure the EU asked these hospitals to step down from their roles by 14 November 2018. In the case of the EpiCARE ERN, Great Ormond Street Hospital is no longer the coordinating hospital. This is a huge blow to the hospital and staff who worked so hard to make the EpiCARE ERN an outstanding network.
To see the full article, explanatory videos and support the campaign visit Genetics Alliance UK website
Courtesy of Genetics Alliance