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European Parliament Elections 2024: What They Mean for Rare Disease Advocacy 

junio 2024

The dust has settled after a whirlwind European Parliament election, and it’s time to unpack what it means for the rare disease community across Europe. 

This year’s elections have brought about changes that will undoubtedly impact EU health policies in the coming years. So, what happens now? 

Election Results and What’s Next 

The European Parliament plays a crucial role in establishing legislative and budgetary priorities for the EU. As the only directly elected EU institution, it stands alongside the Council and the European Commission, which are the other main arms of the EU. While MEPs do not have the right to propose new laws – a privilege held by the Commission – they play a critical role in debating, amending, and negotiating legislative proposals and adopting the EU budget. 

In the coming months, the newly elected MEPs will have a busy schedule. They will gather for the constituent plenary sitting in Strasbourg from 16 to 19 July to elect their President, 14 Vice-Presidents, and five Quaestors, marking the start of the new legislative term. The Parliament will also decide on the makeup of its standing and sub-committees. 

Subsequently, MEPs will elect the new President of the European Commission and subsequently examine and approve the College of Commissioners. The new European Parliament must approve or reject the nominees for Commission President and the 26 commissioners, who are responsible for key EU policy areas, including health, for the next five years. These initial sessions will set the stage for the new Commission to address urgent issues, such as those affecting people living with rare diseases across Europe. 

Pre-Election Promises on Health and Rare Diseases 

The next European Commission and Parliament will inherit a mandate where health was a critical priority due to the COVID-19 crisis. Despite health featuring in most European political party manifestos, except ALDE’s, significant concerns have arisen due to a €1 billion reallocation from the health budget to defence and health’s absence from the EU’s strategic agenda for 2024-2029.  

This has alarmed civil society and patient groups, especially as analysts predict the health budget will not return to pre-COVID levels, potentially leaving it underfunded in the face of ongoing healthcare crises and challenges like rare diseases and mental health. 

Moreover, this reallocation contradicts public opinion, as health ranks as a top concern among European citizens according to a recent Eurobarometer survey, entitled “Use your vote – Countdown to the European elections.” 

Promisingly, 90 European Parliament candidates from across the political spectrum also signed our #ActRare2024 campaign pledge, committing to specific policy actions to ensure longer, healthier, and better lives for the 30 million people living with rare diseases in Europe. 

The extent to which these promises are kept will depend on the political groupings’ priorities, the legislative files they progress, and their voting decisions over the next five years. 

Key Health Policy Areas for New Policymakers 

The incoming European Commission and Parliament will inherit several critical health policy areas. First up is the European Health Union, which aims to strengthen the EU’s health crisis response mechanisms and ensure a unified approach to health emergencies. 

Additionally, the Pharmaceutical Strategy for Europe focuses on ensuring the availability, accessibility, and affordability of medicines, particularly addressing medicine shortages. We urge key EU stakeholders to advocate for developing new treatments for rare diseases, involve patients and their families in discussions on unmet medical needs, and explore more equitable access methods across the EU, such as using EU joint procurement, as suggested by Enrico Letta’s recent report on the EU single market

The European Health Data Space (EHDS) initiative aims to create a unified framework for health data sharing, enhancing research and healthcare delivery. This agreement is pending approval from both the Council and the European Parliament.  

Meanwhile, mental health remains a focus, with ongoing efforts to address the challenges intensified by the COVID-19 pandemic. However, the funding for this strategy falls short of expectations, and it has yet to fully include all individuals in vulnerable situations, including those with rare diseases. 

Prospects for a European Action Plan for Rare Diseases 

One of the most eagerly anticipated developments is the prospect of a European Action Plan for Rare Diseases. This initiative has seen significant political momentum over the past few years. The Rare 2030 Foresight Study, conducted between 2019 and 2021, provided a strategic framework, highlighting the need for a comprehensive action plan to address the needs of the rare disease community. In November 2021, the European Parliament debated and urged the European Commission to develop such a plan, underscoring the importance of coordinated EU action. 

The trio EU Presidency – France, the Czech Republic, and Sweden – reinforced this call with 21 Member States endorsing the Czech EU Presidency’s Call to Action on rare diseases at the EPSCO Council Meeting in December 2022. 

Most recently, the European Conference on Rare Diseases (ECRD) in May 2024 showcased strong community support for the initiative. Notably, the conference resulted in an Open Letter comprised of key recommendations to the next European Commission, including expanding newborn screening, improving data interoperability, and fostering research and innovation in rare disease treatments. 

The next five years present a promising window for advancing this critical agenda, with continuous advocacy and policy dialogue expected to drive the integration of rare disease priorities into the new EU legislative framework. 

Continued Advocacy 

Looking ahead, EURORDIS will remain steadfast in our commitment to advocate for the needs of people living with rare diseases, as outlined in the eight key areas of our manifesto

 The new legislative term will bring both challenges and opportunities, and we are prepared to work closely with the new European Parliament and Commission to ensure that rare disease policies are prioritised. 

Together, we will strive for a more inclusive and supportive healthcare system that leaves no one behind. 

Stay tuned, stay engaged, and let’s continue to push for the changes that will make a real difference in the lives of millions across Europe. 

Stanislav Ostapenko, Communications Director