Saturday, June 22, 2024

EU Urged to Prioritize Rare Diseases: Open Letter Calls for Action

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The Rare Disease community has urged future EU policymakers to prioritize rare diseases in upcoming health policies. This call to action emerged from the 12th European Conference on Rare Diseases and Orphan Products (ECRD 2024), where stakeholders gathered to address the challenges faced by the rare disease community. The community emphasizes the urgent need for a comprehensive European Action Plan for Rare Diseases to address critical needs and improve health outcomes for 30 million Europeans living with rare diseases and their families. The plan aims to create a cohesive and effective strategy that bridges the gaps in current healthcare systems, ensuring equitable access to care and support for all affected individuals.

Key Policy Recommendations

At the ECRD 2024, stakeholders discussed and shaped clear, goal-driven policy recommendations. The open letter calls for the next European leaders to maintain health at the forefront of future policies, develop an integrated European Action Plan for Rare Diseases, and immediately address the most pressing needs of the rare disease population. These recommendations highlight the importance of a coordinated effort across all EU institutions and member states, emphasizing the need for innovative solutions and substantial investments to improve the lives of those affected by rare diseases. The collaboration among various stakeholders underscores the collective commitment to driving meaningful changes in healthcare policy.

As European elections approach, the rare disease community advocates for a strong and resilient European Health Union. They emphasize the importance of a substantial health budget allocation under the Multiannual Financial Framework 2028–2035. A future-proof rare disease policy is essential for an inclusive European Health Union that ensures crisis preparedness and long-term health stability. By prioritizing health in policy agendas, the EU can safeguard the well-being of its citizens and build a robust healthcare system capable of addressing both current and future challenges. This proactive approach is crucial for fostering innovation, improving patient outcomes, and ensuring sustainable healthcare solutions across Europe.

rare diseases

The community’s foremost appeal is the development of a comprehensive European Action Plan for Rare Diseases. This plan should ensure coordinated action across EU Institutions and Member States, addressing fragmented care systems and providing a unified approach to rare disease management. The broad consensus on the need for such a plan underscores its inclusion in the European Commission’s 2024–2029 Work Programme as a crucial step forward. By leveraging collective expertise and resources, the action plan aims to maximize the impact of existing initiatives and address the ongoing unmet needs of the rare disease community, ensuring timely and effective support for patients and their families.

A detailed policy framework emerged during the ECRD, identifying tangible actions for a unified European Action Plan for Rare Diseases. These actions, reflecting the needs of patient advocacy groups, healthcare professionals, policymakers, researchers, and industry partners, aim to drive immediate, impactful changes. They should be integrated into EU4Health, Horizon Europe, and other EU programmes from 2025 to 2027. This comprehensive approach ensures that the diverse needs of the rare disease community are met through targeted interventions, fostering an environment of continuous improvement and innovation in rare disease care. The implementation of these actions will significantly enhance the quality of life for those affected by rare diseases.

European Action Plan for Rare Diseases

Establish an overarching framework with measurable objectives.

Support collaborative actions across EU Member States.

Create an EU-wide multistakeholder body to oversee these actions.

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Promote cross-country cooperation on newborn screening.

Enhance accessibility and standardization of screening programmes.

The rare disease community urges the EU to build on existing initiatives like the European Reference Networks, Orphanet, and the European Partnership for Rare Diseases ERDERA. These efforts provide a solid foundation for the proposed strategic initiatives, aiming to consolidate a robust framework addressing the complex challenges faced by the rare disease community. By enhancing and expanding these initiatives, the EU can ensure that rare disease patients receive comprehensive and coordinated care, fostering a more inclusive and effective healthcare system that meets the unique needs of this population.

The open letter represents a unified call from the rare disease community for bold, decisive action. By harnessing the momentum for change and consolidating a European Health Union for rare diseases, the EU can ensure that the needs of 30 million people living with rare diseases are met. Sign the Open Letter today to support this crucial initiative. This collective effort highlights the importance of solidarity and collaboration in achieving significant advancements in healthcare, ultimately improving the quality of life for individuals affected by rare diseases and their families across Europe.



Resource: Rare Diseases Europe, May 29, 2024

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