Thomas Smith, rare disease patient advocate

European Reference Networks (ERNs) promote discourse and collaboration on conditions that require consolidation of knowledge and resources to benefit patient communities. ERNs connect centres of excellence for specific diseases within Europe. No matter what comes between two nodes in a network, borders (and in our case the English Channel) – data, information and knowledge that changes people’s lives every day continues to flow freely.

Thomas Smith

While the European Commission created the governance frameworks for the ERNs, it is down to the cooperation of national healthcare authorities and healthcare providers to make use of them. It is the trust and interdependence of these organisations and that crucial transfer of ownership that makes them useful entities of enormous human value.

Why is it important for hospitals to continue to take part in European Reference Networks after Brexit?

Of the 508 million citizens located within the EU, around 30 million suffer with rare disease and, due to the obvious low prevalence of these kinds of illnesses, treatment can happen in relative isolation. European Reference Networks offer a unique opportunity to continue to progress healthcare on an unprecedented scale and transform the lives of those currently living with disease via collaboration. What we don’t want to happen is to create more barriers between patients and their families and diagnosis or a better health outcome. To be clear these exist currently even with ERNs and fragmenting the network through which knowledge is shared will only labour these difficulties further.

No country alone has the knowledge and capacity to treat all types of rare, complex and low-prevalence conditions and diseases’ – European Commission

While the NHS is currently a leading healthcare provider in Europe, withdrawing our participation from ERNs will negatively affect the standard of care it is able to provide patients with a rare disease.

Participation in and utilisation of ERNs is far bigger than the rare disease community. If British participation in ERNs is withdrawn you might think that this doesn’t affect you right now but the odds of it affecting you, your loved ones or simply people you know at some point in the future are high. We owe it to ourselves, those living and those yet to be born to approach ERNs with a little more pragmatism than we’ve managed of late.

If we don’t, the front line of healthcare in all disciplines will suffer further as a result and we only stand to make an already uncertain looking future worse. Ultimately, people will die prematurely.

I shall leave you with this: In 1624, John Donne was diagnosed with typhus and was lucky enough to escape with this life. It was during his recovery that he penned one of his most famous meditations ‘No man is an island’.

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