Check against delivery.


Madam Minister Lydia Mutsch,

Ladies and Gentlemen,

It is a great pleasure to speak at this kick–off meeting of the Joint Action on Rare Cancers.

I would like to begin by warmly thanking the Minister of Health of Luxembourg and the representatives of the Italian Health Ministry for joining us today.

My special thanks to the Italian Institute of Cancer who is leading this Joint Action; and to all of you here in this room, for participating in this important project.

I don’t have to tell you that cancer is a huge challenge or that the clock is ticking on an oncological time bomb.

Preventing and controlling this devastating disease is essential and requires targeted policies and excellent European cooperation.

Cancer is complex. There is no straightforward solution. It is influenced by multiple factors including genetics, environment and lifestyle, infectious agents, ageing and many more.

Rare forms of cancer are particularly complex to address.

186 different types of cancer, including all childhood cancers, affect only a small number of patients each. Together, however, they affect over 4 million people and account for 22% of all cancers diagnosed in the EU each year.

People who suffer from rare cancers struggle with a particularly challenging set of circumstances:

  • late or incorrect diagnosis,
  • lack of access to appropriate therapies and clinical expertise,
  • very few clinical studies due to the small number of patients,
  • lack of interest in developing new therapies due to limitations in the market,
  • few available registries and tissue banks.

Faced with these, it is not surprising that the five-year survival rate is worse for rare cancers than for common cancers: 47% for rare cancers versus 65% for common cancers.

There is no specific strategy to prevent rare cancers.

However, the measures recommended in the European Code against Cancer apply to all forms of cancer.

I encourage all stakeholders to support and disseminate this code. 

More encouraging are the developments in new medicinal products.

The EU’s orphan legislation has been a successful tool to attract and support the development of new treatments for patients.

In recent years, increasing numbers of products received an orphan designation following approval by the European Medicines Agency. There are now over 1,300 orphan products, 60% of which are used for treating rare cancers.

However, these medicinal products must be accessible to make a difference. Many patients struggle to access these innovative new treatments, or have to wait a long time – sometimes years – to do so, particularly in smaller Member States.

These are clear weaknesses in the system. We have therefore launched initiatives to improve implementation of the regulatory framework and adapt it to scientific and technical progress, and to further incentivise the development of orphan products.

Ladies and Gentlemen,

The Cross-border Healthcare Directive also offers important opportunities to treat rare diseases and cancers. It provides a legal framework for Member States’ cooperation and the basis for the European Reference Networks.

Many of the rare cancers are simply too rare for individual countries to invest into the much needed expertise to diagnose and treat them: European Reference Networks can help solve this problem by pooling expertise from different EU countries.

These networks, once assessed and approved by the Board of Member States are expected to be operational in early 2017. They will facilitate access to diagnosis, treatment and provision of affordable, high-quality and cost-effective healthcare for rare cancer patients of all ages.

They are an excellent example of a formal EU structure for voluntary collaboration in healthcare; they show that EU solidarity can make a real and positive difference to individual patients' lives.

I admire the excellent work done by the rare cancer clinical community, including many of you, in preparing your applications for the first call for membership of the networks.

I am fully aware of the complexity of the task and your high level of commitment; but I know your work will make an invaluable contribution to developing and supporting innovative treatments for rare, low prevalence and complex diseases and conditions.

As the European Reference Networks system is completely new, there are still many areas to develop and challenges to overcome.

This new system needs full cooperation from all players across the spectrum to turn it into the reality for the patients who need it. We need commitment across health and healthcare, across research and information technologies, across the Commission and across national health ministries. Your contribution is paramount to its success.

I am happy to see that there is already a strong feeling of trust and ownership for the European Reference Networks model. This is crucial to get the networks up and running. Once we have achieved this, we need to use all the financial tools available to ensure they are sustainable. 

This includes grants under the Health Programme to support network coordinators, and funding from the Connecting Europe Facility to create the IT platform and online workspace.

The Commission has been supporting projects on rare cancers under the Health Programme, including the project Surveillance of Rare Cancers in Europe RARECARE; and the Information Network on Rare Cancers RARECARENET.

These projects provided an important basis for the Joint Action we are launching today; they provided indicators on the burden of rare cancer; and information on diagnosis and management of rare cancers, and on dedicated patients’ associations.

The Commission also supports, under the Health Programme, a European Expert Paediatric Oncology Reference Network. By providing healthcare to children in another Member State – when the expertise is rare and the case volume low – this pilot network gains experience which will be useful for future reference networks.

This EU Joint Action on Rare Cancers will complement and support all these efforts in the coming years and provide a joined-up framework for all stakeholders to work together:

  • First, to prioritise rare cancers, with a view to establishing national cancer plans, harmonising clinical practice and funding research;
  • Second, to develop innovative and shared solutions in the areas of epidemiological registration;
  • Third, to support policy planning – with a focus on national cancer plans;
  • Fourth, to improve quality of care – with a view to maximising patient access to therapies – innovation and research, education and state-of-the-art definition on prevention, diagnosis and treatment of rare cancers.
  • Fifth, to develop clinical practice guidelines that encourage shared decision-making between patients and doctors in an uncertain context.

Finally, let me assure you that, in addition to this Joint Action, the Commission will also support research into rare diseases, including rare cancers, via Horizon 2020 and through our Joint Research Centre’s patient registries.


Ladies and gentlemen,

Effective cancer policies and strategies benefit both the people they target, and the health systems that sustain them.

Working together is the best means to address rare cancers. Let us then work together to help provide diagnostics, healthcare and support to all our citizens who suffer from rare cancer – across the European Union.

You can count on my full support and commitment.

Thank you for your attention.