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EURORDIS welcomes cross-EU institution and Member State support for JARDIN

Март 2024

8 March 2024, Brussels – EURORDIS-Rare Diseases Europe welcomes the successful conclusion of the political conference on rare diseases, marking the final day of the JARDIN kick-off meeting. JARDIN, the pivotal EU Joint Action for integrating European Reference Networks (ERNs) into National Healthcare Systems, represents a significant stride towards enhancing care for rare disease patients across the EU.

The conference showcased a strong, united commitment from EU institutions, Member States, EURORDIS, and the broader patient advocate community towards integrating ERNs into national healthcare systems and advancing EU rare disease policies.

However, a key theme of the conference were acknowledgements that the success of JARDIN will be largely determined by the quality of implementation at both the European and national levels.

Speaking at the conference, European Commissioner for Health and Food Safety, Stella Kyriakides, underscored the European Commission’s commitment to improving healthcare for people who live with a rare disease, saying: “Nobody should be left behind no matter where they live no matter their disease so we need strong cooperation for affordable treatment diagnostic and care … We need strong EU cooperation so that everyone has access to timely diagnosis, affordable treatment, and care.”

Gallina also highlighted the foundational role of ERNs: “ERNs are the cornerstone of our rare diseases approach. We should try to use them to improve access – I stress the word access – to expert care, to promote multi-disciplinary approaches, facilitate cross-border healthcare, share best practices but also to involve the patients throughout the process.”

Meaningful dedication to the Joint Action and to supporting the ERNs was also stated by the current Belgian Presidency of the Council of the EU. Sabine Stordeur, Director-General for Healthcare of the Belgian Ministry of Health.

Stordeur underscored the critical need for the sustainability of European Reference Networks (ERNs) and robust EU collaboration in rare diseases to significantly impact patients’ lives. She also emphasised the necessity of facilitating access to medicines, leveraging Belgium’s collaboration with neighbouring countries to enhance treatment accessibility.

Stordeur additionally highlighted the importance of clear patient pathways, stakeholder engagement, and financial planning to consolidate ERNs’ future successes and improve healthcare frameworks for rare disease patients, stressing the role of the EU in fostering equitable access and supporting shared healthcare goals.

Oliver Röpke, President of the EESC, voiced the ambition for future plans: “We want to see a European Action Plan on rare diseases, attainable by 2030. We want this plan to ensure that all rare disease patients in the EU have equal opportunities for diagnosis, treatment and a holistic perspective of integrated care.”

Röpke affirmed the EESC’s ongoing commitment to improved rare disease policymaking: “We will ensure political commitment in the Member States and the EU institutions in the years to come.”

Röpke’s colleague, Alain Coheur, who led the EESC’s last Opinion on Ensuring strong European solidarity for rare disease patients in 2022, also spoke at the conference, emphasising the critical role of civil society and the EESC’s advocacy for rare diseases within European healthcare.

Coheur highlighted the need to address patient isolation, raise awareness among healthcare providers, and tackle the challenges of delayed diagnoses and inadequate treatments. Coheur stressed the importance of solidarity in healthcare, particularly for rare diseases, urging for continued focus and ambition from the European Commission to ensure comprehensive support and coverage for affected individuals and their families, thereby reinforcing the need for European solidarity in addressing healthcare disparities.

From the perspective of EURORDIS and speaking on behalf of Europe’s rare disease community, Ines Hernando highlighted the critical role of ERNs: “The raison d’etre of ERNs is to improve health outcomes of people living with a rare disease or complex condition but they can’t do that if they are not connected.”

Hernando also expressed gratitude and optimism for the project: “We welcome the ambition and the comprehensiveness of JARDIN and I want to thank everyone else for being bold.”

Reflecting afterwards on the success of the JARDIN kick-off meeting, Hernando said: “JARDIN’s success hinges on political leadership from national health authorities, which will be essential for integrating ERNs into our national health systems. It’s critical that these authorities also establish governance structures with the rare disease community to set priorities, define integration roadmaps, and monitor progress.”

“JARDIN is not a mere project,” Hernando continued. “It is a project that is poised to scale up ERNs’ impact, potentially benefiting tens of millions of Europeans living with a rare disease.”


About EURORDIS-Rare Diseases Europe

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1,000 rare disease organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting people, families, and rare disease groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies, and services.

Contact

Julien Poulain
Communications Manager
EURORDIS-Rare Diseases Europe
Julien.poulain@eurordis.org
+33 6 42 98 14 32