EURORDIS launches call for applications to Digital & Data Advisory Group (DAG) +++

EURORDIS – Rare Diseases Europe is expanding its team of volunteers and inviting applications to our Digital and Data Advisory Group (DAG). The group provides advice to EURORDIS on all aspects of digital health policies and procedures, with the mission of recognising and acting upon opportunities for people living with rare diseases. https://www.eurordis.org/call-for-applications-to-digital-data-advisory-group/ The State of Health in the EU Conference in the framework of the Belgian presidency of the Council of the European Union https://www.eesc.europa.eu/en/agenda/our-events/events/state-health-eu Earlier this month, EURORDIS Board Member Tomasz Grybek spoke at the European Economic and Social Committee’s Conference on the 'State of Health in the EU' in a dedicated panel on rare disease. He spoke of the need for a European Action Plan for Rare Diseases, and highlighted the importance of health remaining a priority amongst EU political and financial choices. Genetic diagnostic technology a game changer for rare diseases, but ethics concerns linger By Vasiliki Angouridi | Euractiv's Advocacy Lab https://www.euractiv.com/section/health-consumers/news/genetic-diagnostic-technology-a-game-changer-for-rare-diseases-but-ethics-concerns-linger/ Euractiv's latest article on genetic diagnostic technology features Jessie Dubief, EURORDIS' Social Research Director. The article highlights the Rare Barometer diagnostic survey findings, and reports on last month's session on diagnosis at our European Conference on Rare Diseases and Orphan Products (ECRD 2024).