ERNs
ERNs success stories
The European Commission has recently released a special ERN booklet to raise awareness about European Reference Networks.
ERNs
European Conference “For an EU commitment to tackling rare diseases”
A conference organised by the European Economic and Social Committee (EESC) called "For an EU commitment to tackling rare diseases" took place on 29th November in Budapest.
ERN-EYE, ERNs
ERN-EYE at ESHG, EUNOS and RIWC 2024
ERN-EYE took part in three big congresses in June: ESHG, EUNOS and RIWC 2024 with boothes to increase awareness about the network, work, goals, and mission.
ERNs
JARDIN Joint Action kick-off Meeting
From 6 to 8 March 2024, the JARDIN Joint Action was officially launched during a kick-off Meeting in Brussels. Pr Hélène Dollfus, ERN-EYE coordinator, has attended the meeting.
ERNs
Statement by Commissioner Kyriakides
Statement on the future of rare diseases in Europe, and in particular European reference networks.
ERNs
Open letter of the rare diseases community
October 2023
An open letter signed by all ERNs calling for a renewed and continuous support to the ERNs was published.
ERN-EYE, ERNs
First patients enrolled in REDgistry – July 2023
September 2023
As of July 2023, the first patients have been enrolled in REDgistry, after giving their informed consent.
ERNs
Introducing Together4RD’s newly published Position Statement on collaboration between ERNs and industry!
September 2023
ERNs, Events
Black Pearl Awards – It’s nominations time again!
September 2023
ERNs
ERICA Survey on ERNs and Clinical Research
May 2023
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