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Press release: Rare Cancers Europe: Improving The Organisation Of Healthcare For Rare Cancer Patients

10 Mar 2015

MEP Alojz Peterle, Rare Cancers Europe, & the European Society for Medical Oncology to host Brussels event on European Reference Networks for rare cancer patients

Lugano, Switzerland. Alojz Peterle, President of MEP’s Against Cancer (MAC), will host a workshop in Brussels on 24 March 2015 to explore how European Reference Networks (ERNs) can help find solutions for the unique needs of rare cancer patients.

Rare cancers affect over four million people in the EU (1) and - taken together - 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%).

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 (ERN) that would allow patients to access the best care, wherever it is available.

Rare Cancers Europe is calling for the creation of specific ERNs dedicated to the 12 identified families of rare cancers for which a distinct patient referral pattern can be identified and suggested.

In order to discuss the development of European Reference Networks within the cross border healthcare framework, MEP Alojz Peterle and Rare Cancers Europe, together with the European Society for Medical Oncology (ESMO), have organised an event in Brussels, Belgium, on 24 March 2015 from 13:00 to 15:00.

For more information and interview opportunities, please contact Jackie Partarrieu on:

  • rarecancersnews@esmo.org
  • +336 23 14 57 84



  1. Rare Cancer list

Notes to Editor

Last update: 10 Mar 2015

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