European Action Against Rare Cancers

action_against_rare_cancers.gifAt 24th of June 2009 a new campaign European Action Against Rare Cancers has been launched. The new campaign urges European policy-makers to prioritise better treatment and care for patients with rare cancers within the framework of the new Commission Communication on cancer and other recent policy initiatives such as the Council Recommendation on Rare Diseases. The CML Advocates Network is one of the supporting organisations. The campaign has launched a Call to Action – an international petition appealing to all stakeholders to initiate targeted actions to address the challenges of rare cancers.
Nearly half a million Europeans live with a rare cancer. Despite the rarity of each individual cancer type, rare cancers represent in total about 20% of all cancer cases, including all cancers in children. Rare cancers are classified in the group of rare diseases which is defined in the EU as diseases with a prevalence of fewer than 5 cases out of a population of 10,000. As such, patients with rare cancers are faced with the same problems as other patients with a rare disease, such as lack of information, inefficient detection and practical obstacles to treatment and care, just because their condition is rare.

With this background, the initiative has established a Call to Action – an international petition to be endorsed by organisations and private individuals. The Call to Action appeals to policy-makers and all other relevant stakeholders to initiate targeted actions and policies that will address the challenges that rare cancers entail for the patients who are living with the disease, for the physicians who are treating the patients, and for the researchers who are working to acquire more knowledge in this field.  

European Action Against Rare Cancers is a joint initiative based on a partnership between the European Society for Medical Oncology (ESMO), European Organisation for Rare Diseases (Eurordis), European Cancer Patient Coalition (ECPC), Conticanet, the Association of European Cancer Leagues (ECL), the Chronic Myeloid Leukaemia Support Group UK, the International Brain Tumour Alliance (IBTA), Orphanet, CML Advocates Network and the European Institute of Oncology (EIO), and as well as Novartis Oncology as the initiating sponsor.  The organisations collaborate as equal partners and all decisions are made on the basis of consensus. The campaign is moreover supported by eight corporate supporters.

For more information please see

Sandy Craine, ECPC Secretary and CML Advocates Network co-moderator
Jan Geissler, ECPC Director and CML Advocates Network co-moderator