Press Release: Urgent Need For European Reference Networks For Rare Cancers

We need to get this right, because this can be a basis for truly adding value to the most vulnerable of our citizens, and having one European Reference Network for 20% of all cancers is not enough.

Brussels, Belgium. 24 March 2015.  The urgent need to provide rare cancer patients in Europe with a structure giving them access to adequate diagnosis and treatment, was at the centre of discussions in the workshop hosted in Brussels today by Alojz Peterle, President of the MEPs Against Cancer group (MAC) and Co-Chair of the Health Working Group at the European Parliament.

Mr. Peterle, who recently received the 2015 MEP of the Year Award in the Health Category, said: “the EU could make a significant impact in rare cancer patients’ quality of life by improving the organisation and access to healthcare, especially by encouraging cooperation between EU countries. There is an urgent need to identify centres of expertise at a national level and to create European Reference Networks (ERNs) (1) that would allow patients to access the best care, wherever it is available.” He added: “we need to get this right, because this can be a basis for truly adding value to the most vulnerable of our citizens, and having only one European Reference Network for 20% of all cancers does not seem to be sufficient.”

The workshop was also attended by MEPs Nessa Childers (Ireland), Charles Tannock (UK) and Franc Bogovic (Slovenia).

“Rare cancer patients face many challenges and have unique needs. Because their diseases are rare, they are difficult to diagnose and expertise is hard to find in a community. Patients often need to travel abroad to find adequate treatment for their malignancies,” said Markus Wartenberg (Sarcoma Patients Network – SPAEN). “Collaboration between professionals across borders can be a matter of life or death, for rare cancer patients.”

A cancer is considered “rare” when it affects less than 6 in 100.000 people per year. Taken together, rare cancers affect over four million people in the EU (2) and represent 20% of all cancer cases, including all childhood cancers. Rare cancer patients face many challenges including late or incorrect diagnosis, lack of approved treatments and lack of information about their disease. Five-year relative survival is worse for rare cancers (47%) than common cancers (65%) (3).

“We understand that it will not be feasible to create a separate ERN (4) for every one of the 198 known rare cancers at this stage,” said Dr Paolo Casali, Chair of Rare Cancers Europe, “but we are proposing that the EU creates at least one specific ERN for each of the 12 ‘families’ of rare cancers for which a distinct patient referral pattern can be identified and suggested.”

Rare Cancers Europe, is a partnership between medical, patient and industry representatives which aims to put rare cancers firmly on the European agenda. “We would like to make sure that every rare cancer patient will be covered by one ERN so that they could find a ‘home’ within the European system of ERNs,” Casali explained.

ERNs would offer doctors a platform to share knowledge, coordinate care and an organised system to collect information.

Enrique Terol, Healthcare Systems Unit, DG Santé explained that “member states will have a key role in the implementation of ERN’s because they remain primarily responsible for the organisation and delivery of their healthcare. They will need to recognise local centres of expertise and endorse them. Some of the challenges will be to avoid duplicating efforts; to develop standardised tools that will ensure a real and efficient exchange of knowledge and to build lasting partnerships between experts, scientific societies, national authorities and EU institutions.”

Mr. Terol explained that the next steps are the call for Framework Contract Assessment Bodies and the call for network proposals, which will take place in December 2015.  The process to establish the assessment methodology and tools for the ERNs should be ready this year.

From the Industry perspective, Veronica Foote, from Novartis, said that “European Reference Networks for rare cancers are necessary to help recruit patients into clinical trials by providing appropriate information about ongoing/planned clinical trials. Ideally a centre of expertise should be recognised for a high level of clinical research and multidisciplinary capabilities.”

“Pooling the expertise available in Europe will strengthen collaboration and ensure that doctors and patients have the most recent information so they can make the best decisions on treatment and care,” said Jan Geissler, representing Chronic Myeloid Leukemia (CML) patients. He concluded: “ERNs could improve clinical outcomes and the quality of life for patients with rare cancers. When you are faced with a rare cancer, you really can’t wait.”



(1) Updated epidemiological indicators for rare cancers:

(2) Rare cancers are not so rare: the rare cancer burden in Europe.

Gatta G1, van der Zwan JM, Casali PG, Siesling S, Dei Tos AP, Kunkler I, Otter R, Licitra L, Mallone S, Tavilla A, Trama A, Capocaccia R; RARECARE working group

(3) Rare cancer list:

(4) Background on ERN’s: and


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