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The public webinar “Towards a World Health Assembly Resolution on Rare Diseases 2025”, that will take place on Aug. 30th 2024, 14:00 and 15:30 CEST. This webinar, co-hosted by Rare Diseases [...]

On August 9 and 10, 2024, the first Myositis Summer School of the Myositis Network Germany, endorsed by the ERN ReCONNET, took place at the Kerckhoff Campus of the JLU Gießen in Bad Nauheim. This [...]

There are a number of challenges surrounding the development of Clinical Practice Guidelines (CPGs) and Clinical Decision Support Tools (CDSTs) for rare diseases. One of the most relevant [...]

The Cross-Border Access to Paediatric Clinical Trials Working Group (WG) created by the European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA) is collecting data. The [...]

IRDiRC‘s Special Edition on “Newborn Screening – Real World Applications and Technologies” is now out. Guest editors are Dr. David A. Pearce chair of IRDiRC and Dr. [...]

The EU Commission developed its AI Act, the first-ever legal framework on AI, which addresses the risks of AI and positions Europe to play a leading role globally. The AI Act  provides AI [...]

The 6th Mental Health & Wellbeing Webinar: ‘How to deliver a diagnosis’ webinar organized by EURORDIS is scheduled for Oct. 23rd 2024 – from 2.00 pm to 3.30 pm CET. The ERN ReCONNET will be [...]

JARDIN is a Joint Action (JA) created to achieve the integration of the ERNs into National Healthcare Systems (NHS). The EU has funded this pioneering 3-year project involving all Member States [...]

The new EURORDIS Rare Barometer survey on the impact of rare diseases on everyday life is now live! By asking questions on your participation in daily activities, such as school, leisure, and [...]

EJP RD is still gathering responses for its survey on the impact of Rare Diseases research resources and tools provided by the Network. As a valued member of the Rare Diseases research community, [...]