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ERDERA marked the close of its second year with an Open Session on ultra-rare diseases, bringing together European, regulatory and scientific perspectives on how innovation can reach patients.
The Joint Transnational Call is expected to open on 1 December 2026, with an information webinar planned for 14 December.
Established in 2012, the EURORDIS Black Pearl Awards recognise contributions across the rare disease community. The programme will return to Brussels and online on 15 February 2027.
EURORDIS’ European Blueprint proposes 18 priority actions across six areas, offering a community-led foundation for a future EU Action Plan on Rare Diseases.
New international guidance supports decentralised clinical trials, pragmatic designs and the use of real-world data.
Ana Rath, Data Services Co-Lead in ERDERA, explains how the consortium is helping researchers and data holders make rare disease data more findable, interoperable and reusable while protecting privacy and keeping data holders in control.
The voluntary data submission framework allows developers to share data generated using New Approach Methodologies outside marketing authorisation applications and receive tailored, non-binding feedback from European regulatory experts.
ERDERA contributed to the first Journée nationale FrBioNet, bringing a European rare disease perspective to discussions with the French biobanking community.