Eurordis welcomes call for health priorities in EU’s strategic agenda

Call for effective action plans for rare disorders, cancer, diabetes, among others

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by Mary Chapman |

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Eurordis is welcoming a recent call for the inclusion of health priorities, including an action plan on rare disorders, in the 2024-2029 European Union (EU) strategic agenda.

The call was made by 27 health ministers of the Employment, Social Policy, Health, and Consumer Affairs (EPSCO) Council, which unanimously urged the European Council’s (EC) national heads of government to make the inclusion at the June 21 meeting of the EPSCO Council in Brussels. The EPSCO Council, an EU Council of Ministers formation, is composed of ministers responsible for employment, social affairs, health, and consumer policy from all EU member states.

The health ministers concluded that “solidarity is a fundamental principle of the European Union and a pillar on which the Health Union should be built” and urged member states to “promote solidarity in the field of health.” The ministers also emphasized the “urgent need to continue to build upon and improve the European Health Union in light of the systemic challenges our health systems are facing today.”

Specifically, the ministers called on member state leaders and the European Commission, which implements European Parliament and EC decisions, to back implementation of effective action plans for cancer, diabetes, mental health and neurological conditions, rare diseases, and cardiovascular and chronic respiratory disorders.

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30 million people in Europe live with rare diseases

According to a Eurordis press release, a proposed action plan for rare diseases, such as aromatic l-amino acid decarboxylase deficiency, would be a “crucial step” toward ensuring that the 30 million people in Europe living with a rare disease are not overlooked in the European Health Union’s development.

The union’s aim is for EU countries to work together to prepare for and respond to health crises and to improve how disorders are prevented and treated. It seeks to better protect citizens’ health and improve the resilience of Europe’s health systems.

“We are greatly pleased that the 27 health ministers have unanimously called for the European Council to prioritise health in the next EU Strategic Agenda and establish a true European Health Union over the new five-year mandate, including a European plan for rare diseases …,” said Valentina Bottarelli, Eurordis’ public affairs director. “This overdue action plan in an area of high EU added value is vital to addressing the unmet needs of the 30 million people living with a rare disease in the EU, along with their families and caregivers.”

Along with the European Parliament, the European Economic and Social Committee, and the European Court of Auditors, Eurordis, a nonprofit alliance of more than 1,000 rare disease patient organizations from 74 countries, has long sought a dedicated European action plan on rare diseases.

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Eurordis’ open letter advocates for European Action Plan for Rare Diseases

At the May meeting of the 12th European Conference on Rare Diseases and Orphan Products, Eurordis introduced an open letter, already signed by 2,000 supporters, for delivery to the next European Commission. The letter, which remains open for additional signatures, advocates for a European Action Plan for Rare Diseases and calls for better EU policies on disease diagnostics, cross-border healthcare, treatment access, mental health support, and national plans.

Eurordis said it is also encouraged that the looming Presidency of the Council of the EU will prioritize rare disorders and host a conference on the subject in Budapest with the European Economic and Social Committee.

“This underscores the importance of keeping rare diseases on the EU’s political agenda as we enter a new five-year mandate,” said Bottarelli. “The Hungarian Presidency’s prioritisation of rare diseases also underscores the ongoing recognition by consecutive Council presidencies of the value of EU-level action in rare disease policymaking, building on the efforts of the preceding French, Czech, Spanish, and Belgian presidencies.”

Eurordis is eager to work with the new Parliament to advocate for inclusive and comprehensive health policies in Europe.

“It is imperative that the European Council prioritises health in its Strategic Agenda,” Bottarelli said. “The responsibility now lies with the European Council and the next European Commission to act on this critical imperative.”