Collaborative network launches to tackle rare diseases

Healthcare is becoming an increasingly collaborative space.  I’ve written recently about a data sharing agreement between Estonia and Finland, and also a pan-European data commons being led by EIT Digital.

The latest project of this ilk are so called European Reference Networks.  This is a European Commission led project to try and prove cooperative platforms for the diagnosis and treatment of rare and complex diseases across borders.

“Today, on European Rare Disease Day, I am particularly pleased to launch the European Reference Networks. As a medical doctor, I have too often been witness to tragic stories from patients with rare or complex diseases who were left in the dark, sometimes unable to find an accurate diagnosis and receive a treatment. I have also seen my colleagues struggling to help because they lack information and opportunities to network. These Networks will connect the considerable EU knowledge and expertise that is currently scattered between countries, making this initiative a tangible illustration of the added value of EU-collaboration. I am very confident that ERNs can light the way for rare disease patients, leading them to potentially life-saving and life-changing breakthroughs,” Vytenis Andriukaitis, European Commissioner for Health and Food Safety, said at the launch.

Collaborative research

Across the 24 thematic ERNs, there are over 900 specialized healthcare units representing 26 different countries.  They’ll be working on a range of issues, from pediatric cancer to bone disorders, with the best expertise from across the EU deployed to tackle some of the trickiest challenges in healthcare today.

Rare diseases are difficult in large part because of their scale.  A disease is classified as rare if it affects no more than 5-10,000 people.  Collectively, there are some 6-8,000 of these in the EU today, and the challenges of tackling a relatively small sample size are considerable.

Suffice to say, the impact of such diseases is significant, not just on the sufferers, but also their families and carers.  Indeed, many go undiagnozed due to a lack of scientific attention given to the disease, or even a lack of suitable expertise.  The fragmented knowledge base for rare diseases together with the small sample sizes presents a significant problem.

Pooling expertise

By creating a virtual network, the ERNs hope to bring together healthcare providers and pool knowledge and resources.  They’re set up under the EU Directive on Patients’ Rights in Healthcare (2011/24/EU), which also makes it easier for patients to access information on healthcare and thus increase their treatment options.

In practice, ERNs will develop new innovative care models, eHealth tools, medical solutions and devices. They will boost research through large clinical studies and contribute to the development of new pharmaceuticals, and they will lead to economies of scale and ensure a more efficient use of costly resources, which will have a positive impact on the sustainability of national healthcare systems, and for tens of thousands of patients in the EU suffering from rare and/or complex diseases and conditions.

The ERNs will be supported by European cross-border telemedicine tools, and can benefit from a range of EU funding mechanisms such as the “Health Programme”, the “Connecting Europe Facility” and the EU research programme “Horizon 2020”.



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