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RCE’s involvement in EU Policy

Since its early days, RCE has been actively involved in driving achievements for rare cancer care. Since June 2009, RCE advocated to address rare cancer challenges and improve quality of treatment through the publication of 39 political recommendations, which then evolved into the 10 recommendations of the Joint Action on Rare Cancers (JARC), namely the Rare Cancer Agenda 2030.

RCE is regularly involved in numerous meetings and roundtable discussions with policymakers and regulators centred on the need to raise awareness about the specificities or rare cancers to ensure they are not overlooked in the EU policy agenda. As a partnership of all actors involved in the field of rare cancers, RCE has been relentlessly working on EU policy developments that directly or indirectly have an impact on rare cancers.

RCE was a collaborative partner of the Joint Action on Rare Cancers and was one of main actors involved in supporting the creation of the European Reference Networks (ERNs) for rare cancers in 2017.  Furthermore, the General Data Protection Regulation (GDPR) and the Clinical Trials Regulation (CTR) saw RCE to advocate for the needs of clinical researchers, the use of data in clinical trials, and welcome a strong approach to protecting patients’ data.With respect to regulatory bodies, RCE closely cooperates with the European Medicines Agency (EMA) and policymakers to improve clinical trial methodology and to leverage the needs of clinical researchers including but not limited to the continued use of data from clinical trials while welcoming a strong approach to protecting patients’ data.

In addition to that, RCE is actively engaged in raising awareness on rare cancers and their challenges by contributing to various EU consultations including on Europe’s Beating Cancer Plan and following the various legislative and non-legislative policy developments.

More than ever, RCE recognises the EU’s unique achievements in this field and remains committed to helping EU institutions and individual Member States protect the future of European patients and health research. RCE offers to mobilise our vast network of medical oncologists, health professionals, research institutions, patient advocates, and industry representatives to support policymakers with a solid and multidisciplinary expertise to adresse rare cancers. 

For more information, please contact the secretariat: rarecancerseurope@esmo.org   

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