Eurordis - Rare Disease Europe

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.

Csaba Dégi, President at the European Cancer Organisation

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.

Virginie Bros-Facer, Chief Executive Officer of EURORDIS

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.

Prof. Gilles Vassal, Gustave Roussy and SIOPE Board Member

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 organisations 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.

Vlad Voiculescu MEP, Intergroup Chair

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.

Stine Bosse MEP, Intergroup Vice-Chair

I am immensely happy that the Intergroup on Cancer and Rare Diseases has come to life. 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.

Tilly Metz MEP, Intergroup Vice-Chair

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 to 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.

Alessandra Moretti MEP, Intergroup Vice-Chair

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.

Tomislav Sokol MEP, Intergroup Vice-Chair