A EURORDIS report from the High-level Ministerial Conference on Rare Diseases

March 2022

On 28 February 2022, the Ministerial Conference on Innovation and Care Pathways: For a European policy on rare diseases took place in Paris at the French Ministry of Solidarity and Health. This was an official event of the French Presidency of the Council of the European Union.

The conference marked a major milestone in the proposal for a European health union for rare diseases, as the first occasion for multistakeholder discussions – including the recorded or physical presence of representatives from 12 Member State Ministries of Health.

Rare diseases affect over 30 million people in Europe, and are largely incurable, complex conditions. They are often accompanied by a scarcity of knowledge and expertise making them an area where cross-sector and crossborder collaboration is critical.

The conference demonstrated that there is a clear appetite to build on the progress from over 20 years of EU policies on rare diseases, as reflected in the majority of speeches by Member States, Members of the European Parliament and civil society. France and Czech Republic, through their concrete commitments during their Presidencies of the EU Council, offered the launchpad for a clear strategic plan, with Health Ministers such as the Belgian assuring their full support.

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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases