A Major Initiative for Cancer & Rare Diseases

 

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 held 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 were 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. 

Read more about the Intergroup on Cancer and Rare Diseases meeting on: touchONCOLOGY

Quotes from Secretariat 

Csaba Dégi, President of the European Cancer Organisation, highlighted: 

'Creating a new Intergroup on Cancer and Rare Diseases is a precious opportunity to accelerate our fight against these often-deadly illnesses. Working within such a group allows us and our oncology experts to engage in more direct and productive collaboration with MEPs of all political stripes. Bit by bit, we are clearing the way for more effective cancer policies across Europe.'

Commenting on the launch of the Intergroup, Virginie Bros-Facer, CEO of EURORDIS, said: 

'Rare diseases affect over 30 million people across Europe, yet many patients face challenges such as an average diagnostic delay of over four years and limited access to effective treatments – with 95% of rare diseases still lacking an approved therapy. The launch of the European Parliament’s Intergroup on Cancer & Rare Diseases represents a vital opportunity to address these inequities.'

Prof. Gilles Vassal, Gustave Roussy and SIOPE Board Member, added: 

'Every year, 35,000 children and young people in Europe face the devastating reality of a cancer diagnosis, with many experiencing long-term challenges into adulthood. Despite the progress made through initiatives like Europe’s Beating Cancer Plan and the EU Cancer Mission, significant gaps remain in addressing the needs of young cancer patients. The newly established European Parliament Intergroup on Cancer and Rare Diseases will be a forum for enhanced dialogue among various stakeholders in the health sector and policy makers. SIOPE will advocate for the need to increase cure rates, improve quality of care and eradicate inequalities in access to high quality research and care for children and young people with cancer.'

Quotes from MEPs 

Chair – Vlad Voiculescu MEP 

'The launch of this Intergroup on Cancer and Rare Diseases is a crucial step towards fostering greater collaboration and driving meaningful change in the lives of patients. By uniting members from across the political spectrum and working alongside leading non-profit organizations like SIOPE, EURORDIS, and ECO, we will ensure that cancer and rare disease patients have a stronger voice in Europe’s policymaking. Together, we aim to create policies that improve access to care, research, and treatment across the continent.'

Vice Chair – Stine Bosse MEP 

'Rare disease is one of my key priorities in the next five years, and I am delighted that the Intergroup on Cancer and Rare Diseases will provide a strong cross-party policy platform to help millions of Europeans and their families get better pathways to diagnoses, equitable access to care – including across borders – and improve access to cutting-edge therapies that can and should be innovated here, in Europe.  

There are no two ways about it: this is an area where the EU can and does clearly add value. No European country can gather enough expertise and data to successfully address these diseases by itself. But if we share our data and work across borders, we can help far more people, we can diagnose and treat patients more quickly and efficiently, and we can become more competitive and innovative as an economic block.   

The coming years will offer excellent opportunities to negotiate and design better policies on pharmaceuticals, clinical trials, cross-border care, and innovation in biotech and life sciences. We will certainly work to make sure that the EU budget rightly prioritises health expenditure as an investment – not as a cost. This group will be the beating heart of our efforts to deliver on these priorities in the European Parliament.'

Vice Chair – Tilly Metz MEP 

'I am immensely happy that the Intergroup on Cancer and Rare Diseases came to live. I am devoted to advancing the fight against cancer through a comprehensive and innovative strategy together with other MEPs and civil society partners. My focus lies in prioritising prevention, tackling environmental risks, and advocating for equitable access to affordable treatments, ensuring that cancer patients across Europe receive the care they need. 

Some of the key actions that will be organised by the Intergroup in its first year include hearings in the European Parliament on the topics of the upcoming Multiannual Financial Framework (MFF), access to treatment and the General Pharmaceutical Legislation, as well as submitting relevant amendments, drafting parliamentary questions and proposing other parliamentary initiatives. 

To celebrate the commencement of this new Intergroup, a reception event will be held in March with the participation of all members of the Intergroup and their stakeholders'

Vice Chair – Alessandra Moretti MEP 

'This new parliament, together with the European Commission, has the responsibility to implement the beating cancer plan approved last term, it is time to put the plan at work in the interest of patients and healthcare professionals. the main mission of this intergroup will be to make sure that the fight against cancer stays at the centre of the EU political agenda' 

Vice Chair – Tomislav Sokol MEP 

'By establishing the Intergroup on Cancer & Rare Diseases in the European Parliament, we reaffirm our commitment to the fight against cancer while also striving to improve access to life-saving treatments for those with rare diseases. This initiative comes at a pivotal moment, as we must ensure that health remains a priority in the European Union and secure adequate funding in the next Multiannual Financial Framework (MFF). Through this Intergroup, we are committed to eliminating disparities in healthcare, ensuring that EU citizens receive the same high-quality care and equal chances of survival— no matter where they live in the EU. I am also pleased that this platform will provide an opportunity to address the need to revise cross-border healthcare rules, a topic that is particularly close to my heart.'