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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La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases