13 September 2010: European Action Against Rare Cancers Secretariat

ESMO appoints Mr. Robert Schaefer, Berlin, to run the European Action Against Rare Cancers Secretariat.

Because of the importance of this initiative to ESMO, Mr. Schaefer will work directly with Alan Howard, ESMO Chief Executive Officer.

As a multi-stakeholder initiative, the European Action Against Rare Cancers (EAARC), is committed to putting rare cancers firmly on the European policy agenda. The EAARC partnership includes scientific societies, rare cancer networks, patient advocacy groups, rare cancer and rare disease associations, rare cancer reference centers, health administrators and politicians, pharma industries.

The strategic focus of the EAARC is to develop scientific-based platforms, gather scientific findings, educate and raise awareness with target audiences, build consensus among professionals and the patient advocacy community, and advocate recommendations for political and stakeholder implementation.

The current goal of the partnership is to implement EAARC’s 39 political recommendations addressing issues of particular relevance in rare cancers. Among these issues are incorrect diagnosis, difficulties finding clinical expertise and to access appropriate treatments, difficulties carrying out clinical studies, possible lack of interest to develop new drugs, and high uncertainty in clinical decision-making.

To rally support for its political recommendations on rare cancers, the EAARC has launched a signature campaign and encourages everyone to sign it. Please click here to show your support for patients with rare cancers and add your signature.

During the 35th ESMO Congress in Milan, a media roundtable discussion on ‘The battle against rare cancers in Europe’ is being organized with the press. The press event on Saturday, 9 October, will host internationally renowned experts in the field of rare cancers, including representatives of the political arena and patient advocates, as well as industry engaged in drug development, and scientists committed to research for rare cancers.

The EAARC partnership is composed of ESMO, who is leading the initiative and running the Secretariat, the European Organization for Rare Diseases (Eurordis), the European Cancer Patient Coalition (ECPC), CONTICANET, the Association of European Cancer Leagues (ECL), the Chronic Myeloid Leukemia Support Group, the International Brain Tumour Alliance (IBTA), Orphanet, the Chronic Myeloid Leukemia Advocates Network, the European Institute of Oncology – Milan, the Istituto Nazionale Tumori – Milano, and Novartis Oncology. In this project, pharma industries are viewed as peer partners, although they also may serve as financial sponsors. The initiative is supported by Novartis Oncology, as founding sponsor, together with several other corporate sponsors.

200. Call to Action