EU Commission ramping up action on rare cancer

The Commission is ramping up action on rare cancer, explains Xavier Prats Monné.

Cancel cells | Photo credit: Fotolia

By Xavier Prats Monné

30 May 2017

Cancer is the second most common cause of death in the EU; rare forms of cancer, which account for 22 per cent of new cases, are especially challenging. There are almost 200 known types of rare cancers, and for many of them knowledge is scarce and scattered across regions and countries.

Patients can therefore face obstacles in accessing the appropriate expertise, obtaining a correct diagnosis and receiving effective treatment. Rare cancers are almost always severe and hard to treat. Sadly, they predominantly affect children.

This February, at the launch of the European Reference Networks (ERN) for rare, low prevalence and complex diseases at a hospital in Belgium, I met a 13 year-old boy named Zoran.


He shared his personal experience of childhood cancer with an audience of doctors, researchers, and journalists. When he was only a baby, Zoran was diagnosed with a very rare form of cancer called neuroblastoma of the adrenal gland, which invaded his bone marrow causing bone metastasis.

He told us about the challenges of undergoing chemotherapy, surgery and stem cell transplantation at a very young age. He explained how three years ago, he had suffered a relapse, which brought him and his family from the Balkans to Leuven to receive further treatment.

The personal story of this brave boy illustrates the importance of cross-border collaboration in diagnosing and treating rare diseases. 

No single country has the knowledge and capacity to treat all forms of rare cancer, but by cooperating and exchanging lifesaving knowledge at European level through ERNs, we can give patients across the EU the chance to access the best expertise available. 

The 24 ERNs active today each cover a specific medical area such as immunodeficiency, bone disorders or childhood cancers. 

Their working method includes convening virtual advisory boards to study individual cases. This means that it is the medical knowledge and expertise that travels, not the patient - a huge benefit for children like Zoran.

To deal with another obstacle in the path of rare cancer patients - namely the lack of targeted drugs, the Commission’s medicines framework provides incentives to encourage pharmaceutical companies to develop treatments for smaller patient groups. 

The EU regulation on orphan medicines sets out incentives, such as fee waivers for regulatory procedures or a period of market exclusivity. This helps stimulate research and development of orphan drugs. Such measures have already resulted in a number of medicines for rare cancers being authorised by the Commission.

With funding of €1.5bn, the EU supports around 1000 projects on research and development of new diagnostics, treatments and tools to fight cancer. 

These include a system for modelling and predicting cancer progress, so that researchers and SMEs can find better-targeted drugs faster and a robot named Casper, designed to help children suffering from cancer by playing and talking with them. 

In addition to research and innovation programmes, the EU health programme helps European countries share information, best practices and guidelines on rare cancers.

The Commission has supported EU countries in their eff orts to tackle cancer for more than 30 years, and actions, focusing on prevention, screening and control, coupled with funding opportunities for research and innovation, have helped to save and extend lives.

Indeed, thanks to early detection and treatment, mortality rates have decreased for certain cancers (e.g. breast), and for these the focus is increasingly turning towards survival and rehabilitation.

While the EU can be proud of its achievements, the battle is far from won. Cancer is still responsible for nearly one in four deaths in the EU; as the EU population ages it is likely to remain one of the biggest killers of the 21st century. 

We must keep up our eff orts on prevention, screening and cutting-edge research and strive to ensure that EU support remains relevant and adds value in areas such as rare cancers - where there are unmet needs - as well as huge benefits of working across borders.

I believe that ERNs are one of the most important and innovative pan-EU initiatives for cooperation in health today. They have the potential to transform the lives of patients with rare and complex cancers, including children like Zoran, with the support and commitment of the Commission, national health ministries and the healthcare, research and IT sectors, they will provide concrete results for tens of thousands of Europeans suffering from rare diseases.


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