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The Rare Cancers Working Group involvement in EU policy

As a partnership of all actors involved in the field of rare cancers, RCWG (former RCE) has been relentlessly working on EU policy developments that directly or indirectly have an impact on rare cancers.

RCWG (former RCE) actively engaging in ongoing discussions at European level by contributing to various EU consultations, as well as actively monitoring all relevant legislative and non-legislative policy developments. Thus, since RCE foundation in 2008, the partnership has been actively involved in driving achievements for rare cancer care. Beginning from 2009, RCE was actively involved in advocating for rare cancer challenges to be addressed and for the quality of treatment to be improved 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 was also a collaborative partner in the Joint Action on Rare Cancers and was one of main actors involved in supporting the creation of European Reference Networks (ERNs) for rare cancers in 2017. Furthermore, the General Data Protection Regulation (GDPR) and the Clinical Trials Regulation (CTR) saw RCE advocate for the needs of clinical researchers to be met, along with the use of data in clinical trials, while stressing a strong approach to protecting patients’ data. With respect to regulatory bodies, RCE closely cooperates with the European Medicines Agency (EMA) to improve to improve clinical research methodology in the disease area.

RCE also called for policy engagement through several policy consultations concerning Europe’s Beating Cancer Plan, Rare Disease & Children medicines, Pharmaceutical Legislation, Cross-Border Healthcare Directive, and the European Health Data Space. Furthermore, RCE launched a Call to Action “Rare Cancers in All Policies” to highlight that rare cancers have particular specificities and require a unique policy approach to overcome their challenges.

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