Foundation For Rare Diseases, ERN Ithaca, ERN Genturis and EURORDIS are relaunching the MOOC ‘Diagnosing rare diseases: from the clinic to research and back’.

A two-day conference under the Polish EU Council Presidency was held at the Medical University of Warsaw on 10 and 11 April 2025. Pr Hélène Dollfus, ERN-EYE coordinator, attended.

The full report on the European results of the latest Rare Barometer survey launched by EURORDIS are now available.

On 28 February 2025, the Committee on Public Health (SANT) of the European Parliament launched a public consultation on rare diseases. The online survey will be available until 31 March 2025.

The Innovative Health Initiative (IHI) RealiseD project (compRehensive mEthodological and operational Approach to cLinical trIalS in ultra rarE Diseases) has been officially launched on 9th January.

The European Rare Diseases Research Alliance (ERDERA) kicks off this September 2024, with the aim of improving the lives of 30 million rare disease patient in Europe and beyond.

The Rare Barometer survey focuses on the impact of living with a rare disease on everyday life.