EURORDIS: EESC right to reaffirm call for European Action Plan for Rare Diseases
23 October 2024, Brussels – EURORDIS-Rare Diseases Europe today warmly welcomes the European Economic and Social Committee’s (EESC) adoption of two Opinions relevant to the rare disease policymaking and affirming the need for greater solidarity with the rare disease community both in the EU and within the Member States.
Namely, the Opinions adopted by the EESC include:
- An Exploratory Opinion at the request of the Hungarian Presidency titled “Leaving no one behind: European Commitment to Tackling Rare Diseases”. (Rapporteur: Alain Coheur.)
- An Own-Initiative Opinion titled “Devising a European flagship initiative for health”. (Rapporteur: Ágnes Cser.)
Collectively, the two opinions emphasise the need for a more integrated and inclusive health framework within the European Union, with a particular focus on solidarity and addressing health inequalities and the challenges faced by the rare disease community.
Speaking at the debate on the EESC’s Opinion on a European flagship initiative for health, Simona Bellagambi, Vice-President of EURORDIS, said:
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Elaborating during the debate on the value of a flagship initiative for health, Oliver Röpke, President of the EESC, said:
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Responding to the EESC’s adopted opinion vote, Valentina Bottarelli, Public Affairs Director at EURORDIS, said:
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About EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1,000 rare disease organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting people, families, and rare disease groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies, and services.
Contact
Julien Poulain
Communications Manager
EURORDIS-Rare Diseases Europe
Julien.poulain@eurordis.org
+33 6 42 98 14 32