Did you know that 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. Watch below how the EpiCARE ERN helped a four-year-old boy with a rare epilepsy condition.
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.
We’re already seeing negative effects from the UK’s withdrawal from the EU – and we haven’t even left yet. That’s why Genetic Alliance UK is running the Protect ERNs campaign – to make sure that families affected by rare and undiagnosed conditions are not disadvantaged.
Louise James, SWAN UK Parent Rep for Bristol, explains why ERNs are so important to her family and her son Scott who is affected by an undiagnosed condition in this blog post. Louise knows that sharing rare disease health data is crucial to improving our understanding of these conditions, and asks: ‘What happens if we don’t have access to this information? If these networks break down? What good is all this amazing research if it doesn’t get shared?’
A breakdown in European Reference Networks would cost lives. Please show your support and add your name to the Protect ERNs campaign here:
Every single name helps to make our voice stronger so that we can put pressure on the Government and EU to prioritise ERNs in their negotiations to agree our future relationship with the EU. Over 1,500 people have signed up. Please can you help us to get to 2,000? If you have any questions or want to share your story about why collaboration is important, please email: [email protected]create new email.