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’.
Latest News
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.
ERN-EYE
ERN-EYE General Annual Meeting 2025
ERN-EYE General Annual Meeting 2025, held on 10-11 April 2025, in Kaunas, Lithuania, successfully brought together around 60 experts, members and patient representatives to discuss ERN-EYE activities.
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.
Events
8th International Competition
The Art and Low Vision association is organising a drawing and painting competition. The competition is open to all, children, teenagers and adults, beginners or experienced artists, with low vision.
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.
Research
New clinical trial map launched in the EU
The map is designed to provide patients and healthcare professionals with easy access to comprehensive, real-time information about clinical trials conducted in their area, increasing access to clinic
ERNs
ERNs success stories
The European Commission has recently released a special ERN booklet to raise awareness about European Reference Networks.
ERN-EYE
New video: Vision and Driving
Update your knowledge in less than 3 minutes with the ERN-EYE video, produced following the European Directive 2006/126/CE.
ERN-EYE
Short Exchange Programme – Feedbacks
Read two feebacks of participants! The ERN-EYE short exchange programme is meant to meet goals and strengthen capacity on the network level.
ERN-EYE
New ERN-EYE Project Manager
Guillaume Parent joined the ERN-EYE team on 20 January 2025 in capacity of projet manager together with Isabella Vacchi.
Research
The DeCODe project call for support
This opportunity is open to a wide range of developers, including academics, individual researchers, startups, industry stakeholders, organisations from diverse settings, and patient-led initiatives.
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