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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.
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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.
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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.
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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.
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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.
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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
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ERNs

ERNs success stories

The European Commission has recently released a special ERN booklet to raise awareness about European Reference Networks.
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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.
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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.
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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.
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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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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.
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