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Rare Cancers Europe Strategy Meeting Discusses the Future Advocacy Priorities and Activities of the Partnership

22 Feb 2023

On 22 February 2023 RCE partners met in Brussels for a one-day strategy meeting to identify and discuss the future direction of RCE partnership, with a particular focus on advocacy activities. A total of 33 partners participated in the event, representing various fields of expertise (patient organisations, scientific societies, healthcare providers, industry, academia, education providers, and research groups). Furthermore, representatives of the World Health Organization (WHO) and the European Medicines Agency (EMA) contributed to the meeting. The meeting was presided over by the RCE Chair, Prof. Paolo Casali and Daniela Morghenti, ESMO’s Patient Advocacy Lead and RCE Secretariat Lead.

The breadth of participation reflects Rare Cancers Europe’s make-up as a multi-stakeholder partnership, representing the full range of stakeholders in the rare cancers field. The strategic discussion consisted of four sessions throughout which RCE partners focused on the external political environment at EU and global level and how to best ensure that RCE’s strategic priorities are reflected in European and global policies.

There is currently a uniquely busy health policy agenda at EU level, and the discussion amongst partners centred on how RCE can best ensure that the needs of the rare cancer community are addressed across policy and legislative initiatives. Thus, a further cooperation with the European institutions, World Health Organisation, and national authorities was highlighted during the meeting.

The strategy meeting also included two external speakers being invited to provide their perspective on rare cancers. Dr Andre Ilbawi, World Health Organisation, emphasised that WHO's work will be focused on improving the competencies and training of those who provide care for rare diseases, as well as organising cancer centres of excellence. Dr Francesco Pignatti, European Medicines Agency , stated that rare cancers remain a high priority on the EMA's agenda since they provide an opportunity to enhance the regulatory system and its procedures.

Following an open discussion on advocacy priorities, it was agreed that RCE has been successful in promoting rare cancers at EU level over recent years, including through the launch of RCE's Call to Action on "Rare Cancers in All Policies" and ensuring that adult rare cancers were included as part of the European Parliament’s Own Initiative Report on Strengthening Europe in the fight against cancer. The discussion therefore focused on identifying the next focus areas for advocacy activities to ensure that this success is continued.

In this regard, the discussion on advocacy priorities was particularly timely given that, amongst other ongoing policy files, the European Commission is set to publish legislative proposals on the revision of the EU’s general pharmaceutical legislation and OMP and Paediatrics Regulations at the end of March. Over the course of the last session, partners had the opportunity to share experiences and expertise to assess RCE’s future direction. Following this and in pursuance of the meeting’s outcomes, the RCE Secretariat will now develop a RCE strategic advocacy plan to ensure that RCE’s successful work to date is leveraged in ongoing policy and legislative files.

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