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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A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases Internacional, é uma iniciativa da EURORDISRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. A RareConnect é uma iniciativa da EURORDIS RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.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 Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases