Objectives of the Intergroup on Cancers and Rare Diseases

An Intergroup on Cancer and Rare Diseases is established for the European Parliament term 2024-2029 to ensure that the unmet needs* of the concerned populations are addressed. To this aim, it will: 

  1. Support the relevance of cancer and rare diseases related policies in the EU political debate, coordinate with the relevant stakeholders such as the scientific community, medical societies and networks, civil society and patient organisations, national and local representatives involved in the fight against cancer and rare diseases; 

  2. Provide a forum for discussion and attention to pressing and emergent policy opportunities and threats for cancers and rare diseases policies at the EU level; 

  3. Foster and promote cross-party consensus on cancer and rare diseases policies at the EU level and collaborate on policy initiatives in this area; 

  4. Monitor the work of the EU for people living with cancer and rare diseases and liaise with civil society to propose concrete recommendations advocating for these rights. 

Policy Priorities of the Intergroup on Cancers and Rare Diseases 

To further guide the work in the Intergroup over the five years of its mandate, policy priorities have been set out. These can be used as a guide for the development of the Intergroup’s annual work programmes and to inform activities that will be carried out by the Intergroup, such as hearings, plenary meetings, and any engagement initiative with other EU institutions undertaken on matters of relevance of the Intergroup.  

  1. Ensure that the unmet needs of people living with cancers and rare diseases are sufficiently represented and addressed in relevant EU legislation and policy, by bringing policy into step with scientific, technical and societal shifts to ultimately improve the lives of these population; 

  2. Promote the financing of EU action in the field of cancers and rare diseases, particularly though the Multiannual Financial Framework (MFF), to ensure that all the above policy priorities are adequately supported by the EU budget. 

  3. Advocate for the improved access to the best possible healthcare, social care and research for people living with cancers and rare diseases, particularly through current and future legislative and non-legislative initiatives, while in particular addressing the growing disparities in the access of healthcare and prevention services for people all across the EU and the access to treatment, in particular innovative therapies; 

  4. Promote discussions based on scientific evidence and data, with the support of experts and scientists with regard to prevention and risk factors for cancer and rare diseases; 

  5. Address the causal link between health and environment, for example by taking into consideration environmental risk factors and commercial determinants for cancer and rare diseases; 

  6. Address and discuss the challenges related to the medical workforce and the impact the current European crisis has on cancer and rare diseases; 

  7. Promote a discussion around the inequalities in access to diagnostics, clinical trials, treatments and care for cancer and rare diseases, including for specific portions of population, such as children, women and elderly; 

  8. Promote the improvement of mental health and wellbeing of people with cancers or rare diseases, cancer survivors and families, recognising the specific needs of these vulnerable population; 

  9. Advocate to ensure adequate rights, social protection and independent living support to ultimately ensure the full inclusion in society of people living with cancers and rare diseases, and survivors, living with a disability, as many face inadequate assessment or recognition. 

Building the experience of Europe’s Beating the Cancer Plan, a European Action Plan for Rare Diseases that bridges diverse policy areas and streamlines existing efforts with clear, measurable objectives, indicators and benchmarks is needed to bring to fruition existing EU leave efforts in the area of rare diseases. A European Plan for RDs would drive more coordinated efforts between the EU and the Member States, foster innovation, and ultimately improve the lives of those affected by rare diseases across the EU as well as positioning the EU as a leader in the field of innovation. 

Topics of discussion

In order to achieve the objectives of the Intergroup, the secretariat will facilitate the organisation of a series of hearings throughout the term on topics such as : 

  • Access to treatments  

  • The revision of EU Pharmaceutical legislation   

  • Cross-Border Healthcare 

  • Risk and Prevention  

 

Other events/activities to be considered could include:

  • Parliamentary questions   

  • Press Releases 

  • Statements/positions  

  • Exhibition events    

To submit an idea for an event, please complete our engagement form here.

*The focus on these unmet needs will recognise the specificities of all population groups, such as people living with rare adult and paediatric cancers, women, children, and the elderly. This focus will build on the European Parliament’s political action and commitment to date, as well as EU initiatives including the BECA Special Committee Report, Europe’s Beating Cancer Plan, the EU Joint Actions in the area of Rare Cancers, Rare Diseases and integration of ERN’s in national healthcare systems.