Rare Disease and Brexit



Government must act now to protect patients from a Brexit backward-step on rare diseases, warns NHS European Office




The NHS European Office is using Rare Disease Day (28 February) to warn that UK patients with rare diseases could soon be pushed to the back of a queue if the UK is ejected from important European networks that combat these illnesses.


It is calling on the Government to defend the UK’s major role in these 24 ‘European Reference Networks’ (ERNs) during Brexit negotiations and to try to prevent its ejection.


European Reference Network's are the most tangible and advanced form of European cross-border healthcare and six of them are UK-led from within some 40 NHS hospitals involved in these Networks. They allow leading specialist care providers across Europe to collaborate and rapidly share the most cutting-edge information on rare diseases, such as some neuromuscular and auto-immune conditions.


The NHS European Office – which is part of the NHS Confederation - is warning that leaving these ERNs would cause delays in access to innovative treatment for many UK patients with rare diseases, and reduce opportunities to take part in potentially life-saving clinical trials. There is also a real risk that talented UK clinicians and scientists would be tempted to migrate abroad.


Furthermore, flagship initiatives could be affected, including the 100,000 Genomes Project, launched by the Prime Minister in 2012, which aims to better understand how DNA can predict and prevent disease.


Niall Dickson, Chief Executive of the NHS Confederation that runs the NHS European Office, said:


“While millions of people suffer from a rare disease, the number of patients with a particular disease in each country is so small that expertise and treatments are not always available. That is why international cooperation is so important.


“Working together we can use scarce resources to be pooled and patients, clinicians and researchers to link up. European Reference Networks have taken this joined-up approach a step further, allowing more formal and organised cooperation for the diagnosis and treatment of rare disease patients.


“We are concerned that the UK’s future involvement in these networks maybe at risk, given that membership is currently restricted to EU and EEA member states. From our perspective it is crucial that UK institutions can continue to work closely with their European counterparts so that UK and other European patients will not lose out.


“In view of the forthcoming Brexit negotiations, it is vital that our negotiators push this issue further up the agenda so that the NHS’s important role in these Networks can be preserved for the benefit of patients.”


Additional Information:

  • The NHS European Office (www.nhsconfed.org/Europe) is based in Brussels and is part of the NHS Confederation. It covers a wide range of EU policy and legislative developments which have implications for the NHS, with a dedicated section on the NHS Employers website also covering European employment policy issues. In addition it offers a range of opportunities for NHS organisations to engage with EU affairs, to access EU support for innovation and to get involved in our work. 
  • For more information on ERNs and NHS involvement see: http://www.nhsconfed.org/blog/2015/10/european-reference-networks-new-drive-tackle-rare-complex-conditions
  • The European Commission’s toolkit is here: http://ec.europa.eu/health/ern/toolkit_en
  • Follow the NHS European Office on Twitter on @NHSConfed_EU or follow the NHS Confederation press office on @NHSConfed_Press.