Saturday, July 13, 2024

Impact on Rare Diseases and EU Health Policies Advocacy: 2024 European Parliament Elections

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The European Parliament elections of 2024 have brought significant changes that will influence the European Union (EU) health policies, particularly for the rare diseases community. The newly elected Members of the European Parliament (MEPs) are set to convene in July to elect their President and other key officials, marking the beginning of the new legislative term. The new European Commission and Parliament inherit a critical mandate with health as a priority, especially post-COVID-19.

However, the reallocation of €1 billion from the health budget to defense and its exclusion from the EU’s 2024-2029 strategic agenda has raised alarms among civil society and patient groups. Various political parties have made health commitments, with the European People’s Party (EPP) emphasizing a European Health Union and mental health, while the Progressive Alliance of Socialists and Democrats (S&D) focuses on healthcare access and system resilience.

European Parliament Candidates Commit to Rare Disease Policies and Health Initiatives

Renew Europe and the Greens/European Free Alliance also made health-related pledges, though some crucial areas like non-communicable diseases (NCDs) were overlooked. Ninety European Parliament candidates signed the #ActRare2024 campaign pledge, committing to specific actions for the 30 million people living with rare diseases in Europe. This pledge includes policy actions aimed at longer, healthier lives for these individuals.

The incoming policymakers will focus on the European Health Union to enhance the EU’s health crisis response and the Pharmaceutical Strategy for Europe to ensure medicine availability and affordability. There is a call for developing new treatments for rare diseases and involving patients in discussions on unmet needs. The European Health Data Space (EHDS) initiative aims to unify health data sharing, pending approval. Mental health remains a key focus, intensified by COVID-19, though funding falls short, affecting those with rare diseases.

Rare Diseases

Momentum Builds for European Action Plan on Rare Diseases

The prospect of a European Action Plan for Rare Diseases has gained momentum. The Rare 2030 Foresight Study and recent endorsements by EU Member States have set the stage for a comprehensive action plan, with strong community support evident at the European Conference on Rare Diseases in May 2024. EURORDIS will continue advocating for rare disease policies, ensuring they remain a priority for the new European Parliament and Commission. The next five years present opportunities to advance this critical agenda, aiming for an inclusive healthcare system.

The European Parliament’s role in debating, amending, and negotiating legislative proposals and adopting the EU budget will be crucial in shaping the future of rare disease advocacy. The success of these efforts will depend on the political groupings’ priorities and their legislative decisions. Continued engagement and advocacy are essential for pushing rare disease priorities into the EU legislative framework. The community is encouraged to stay engaged and support efforts to make a tangible difference in the lives of millions across Europe.


Resource: ٍEuropean Organisation for Rare Diseases, June 12, 2024

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