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The Europe’s Commitment to Rare Diseases Ahead of 2024 Elections

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In the lead-up to the June 2024 European Parliament elections and the forthcoming European Commission appointments, there’s an intensifying effort to keep rare diseases at the forefront of the EU’s political agenda. Prospective policymakers, individual advocates, and patient organizations are rallying together to make the prioritization of rare diseases a key objective for the 2024-2029 legislative term. Their commitment is seen as crucial in advancing eight key areas deemed essential for the rare disease community.

At the heart of this advocacy is the call for a comprehensive European policy framework specifically for rare diseases. There’s a push for the next European Commission to develop a detailed European Action Plan for Rare Diseases. The goal of this plan is to integrate current initiatives into a cohesive strategy with clear, achievable objectives, ensuring a unified approach across all EU Member States and addressing the existing fragmented care and support systems. The formation of a Drafting Group to create this Action Plan is considered a critical step towards a more integrated EU rare disease policy framework.

The Drive Towards a Unified and Patient-Centric EU Policy for Rare Diseases

Advocates, especially those from smaller EU nations, are vocal about the obstacles impeding patient care and access. The campaign for a reformed, unified, and patient-centric European Policy Framework for Rare Diseases is gaining momentum. Such a framework should ensure early and accurate diagnoses and secure patient access to necessary treatments, thus addressing the average five-year delay in diagnosing rare diseases—a delay that imposes significant psychological, financial, and social burdens on patients.

Improving patient outcomes hinges on guaranteeing universal access to diagnostics, enhancing specialized networks like the European Reference Networks (ERNs), and promoting research into innovative diagnostic technologies. Efforts are being directed towards facilitating data sharing, adopting coordinated care for undiagnosed individuals, and improving healthcare professional training to enhance referrals to specialist centers. Furthermore, standardizing newborn screening practices across Europe is seen as a crucial step in transforming the diagnostic process for rare disease patients.

An integrated healthcare pathway is vital for eliminating the ‘geographic lottery’ in European rare disease healthcare, which arises from the uneven distribution of expertise and resources. Integrating ERNs into cross-border and national health systems is a strategic move by the EU to share expertise and reduce healthcare access disparities.

Rare Diseases

Enhancing Rare Disease Care with Innovative EU Policies and Holistic Approaches

The upcoming legislative term is tasked with prioritizing timely access to affordable and innovative treatments. Despite existing EU Regulations on Orphan Medicinal Products and Paediatric Medicines encouraging the development of therapies, challenges in therapy distribution and access persist. The next step is to refine the incentives framework to better support the development of treatments for underserved patients, ensuring that research and development efforts are patient-driven.

Furthermore, adopting a person-centered, holistic care approach is essential. Future EU policies should guarantee equal access to comprehensive care and promote inclusion in education, work, and social protection. Enhancing disability assessments and establishing EU-level guidelines in line with the EU Disability Strategy is crucial for acknowledging and supporting the rights of individuals living with rare diseases.

As the future unfolds, it’s evident that tackling rare diseases requires a comprehensive strategy that includes improved diagnostics, access to treatments, and holistic care. The next EU policymakers possess a unique opportunity to make a significant impact on the rare disease community by endorsing innovative, patient-centered research and leveraging advancements in digital health.

 

Resource: Eurordis, March 18, 2024

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