ERNs, Rare Diseases
New Call – Affiliated Partners
A new call for applications is open for all non-ERN-EYE members wishing to join as an Affiliated Partner. The call will run until 1 September at 23:59 CET.
ERN-EYE, Events, Rare Diseases
ERN-EYE at Euretina 2025
ERN-EYE participated in EURETINA 2025 in Paris, highlighting collaborations with SENSGENE and contributing to sessions on inherited retinal diseases, diagnostic challenges and innovative therapies.
Rare Diseases
MOOC – Diagnosing rare diseases
Foundation For Rare Diseases, ERN Ithaca, ERN Genturis and EURORDIS are relaunching the MOOC ‘Diagnosing rare diseases: from the clinic to research and back’.
Rare Diseases
EU rare disease conference in Warsaw
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.
Rare Diseases
Results of the Rare Barometer survey
The full report on the European results of the latest Rare Barometer survey launched by EURORDIS are now available.
Rare Diseases
Consultation on Rare Diseases
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.
Rare Diseases
Launch of IHI RealiseD Project
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.
Rare Diseases
European Rare Diseases Research Alliance
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.
Rare Diseases
EURORDIS – Rare Barometer
The Rare Barometer survey focuses on the impact of living with a rare disease on everyday life.
Rare Diseases