European Parliament establishes new Intergroup on Cancer & Rare Diseases
3 February 2025, Brussels – The European Cancer Organisation (ECO), EURORDIS-Rare Diseases Europe, and the European Society for Paediatric Oncology (SIOPE) welcome a major initiative from the European Parliament’s Conference of Presidents: the creation of a new ‘Intergroup on Cancer & Rare Diseases’ for the 2024-2029 legislature.
This evening, the Intergroup will hold its first constitutive meeting at the European Parliament in Brussels, officially appointing MEP Vlad Voiculescu (Renew, Romania) as Chair. The appointed Vice-Chairs include Stine Bosse (Renew, Denmark), Tilly Metz (Greens/EFA, Luxembourg), Alessandra Moretti (S&D, Italy), and Tomislav Sokol (EPP, Croatia).
The European Cancer Organisation (ECO), the European Society for Paediatric Oncology (SIOPE), and EURORDIS-Rare Diseases Europe will provide secretariat support to the Intergroup, particularly by facilitating access to top-level expertise on key topics.
The draft Terms of Reference will be discussed, along with general ways of working together. The Intergroup is intended to:
- Ensure the relevance of cancer and rare disease-related policies in the EU political debate.
- Provide a forum for discussion and draw attention to pressing and emerging policy opportunities and challenges related to cancer and rare disease policies at the EU level.
- Foster and promote cross-party consensus on cancer and rare disease policies within the EU, and collaborate on policy initiatives to support these efforts.
- Monitor EU activities related to cancer and rare diseases, and work closely with civil society to develop and propose concrete policy recommendations advocating for the rights of those affected.
The Intergroup’s early identified priorities are:
- Ensuring that the unmet needs of people living with cancer and rare diseases are adequately represented and addressed in relevant EU legislation.
- Promoting the financing of EU actions related to cancer and rare diseases, particularly through the Multiannual Financial Framework (MFF).
- Advocating for improved access to the highest standards of healthcare, social care, and research for people living with cancer and rare diseases. This includes supporting current and future legislative and non-legislative initiatives, while addressing growing disparities in access to healthcare, prevention services, and innovative treatments across the EU.
A process for external parties to engage with the Intergroup will be developed and outlined in the coming weeks.
ECO, EURORDIS, and SIOPE look forward to collaborating with leading parliamentarians from across the political spectrum to strengthen the EU’s efforts on cancer and rare diseases, including rare adult and paediatric cancers. The Intergroup will serve as a platform for community engagement, expert consultation, policy monitoring, and advocacy for effective EU legislation. Its mission is to ensure that every adult and child in Europe living with cancer or a rare disease has access to the best possible care.
Quotes from the Intergroup’s Secretariat
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Quotes from the Intergroup’s MEPs
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About EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1,000 rare disease organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting people, families, and rare disease groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies, and services.
About the European Cancer Organisation
The European Cancer Organisation (ECO) is the largest multi-professional cancer organisation in Europe. It helps reduce the burden of cancer, improve outcomes, and enhance the quality of care for cancer patients. As the not-for-profit federation of member organisations working across Europe, the European Cancer Organisation convenes cancer professionals and patients to agree on policy, advocate for change, and speak up for the European cancer community.
About SIOP Europe
The European Society for Paediatric Oncology (SIOP Europe or SIOPE) is the only pan-European organisation representing all professionals working in the field of childhood cancers. With more than 2,500 members across 35 European countries, SIOPE is leading the way to ensure the best possible care and outcomes for all children and adolescents with cancer in Europe.
Contact
Julien Poulain
Communications Manager
EURORDIS-Rare Diseases Europe
Julien.poulain@eurordis.org
+33 6 42 98 14 32