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.

Download the full report here

 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases