Annual meeting documentation detailing progress reports for MetabERN’s Workpackage 2 and Workpackage 7 initiatives.
MetabERN Annual Meeting – Work progress of Workpackage 2 and 7 Read More »
A collaborative workshop at Hospital 12 de Octubre Madrid sharing practical guidance and recipes for managing low protein diets.
2nd Low Protein Diet Course | 29 March 2019 Read More »
A comprehensive questionnaire gathering patient perspectives on clinical trials across the European rare metabolic disease network.
MetabERN Survey – Patients’ Perspective of Clinical Trials Read More »
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point Rare Disease Day in their life.
Rare Disease Day 2019 | 28 February 2019 Read More »
A February 19 training session introducing the new Clinical Patient Management System 17.0 features for all ERN network members.
CPMS 17.0 Webinar | 19th February 2019 – 14:00 CET Read More »
The February 4-8 annual symposium in Orlando brings together global experts to discuss latest advances in lysosomal disease research.
15th Annual WORLDSymposium | 4-8 February 2019 Read More »
3rd International Homocystinurias Patient-Expert Meeting on Thursday 28th February – Friday 1st March 2019 in Rome, Italy.
3rd International Homocystinurias Meeting | 28 February – 1 March 2019 Read More »
A Vienna congress uniting global rare disease experts to discuss treatment advances, clinical trials and patient-focused innovation.
RARE2019, 4-5 March 2019 | Vienna, Austria Read More »
Annual MetabERN Board meeting starting on Thursday 4 April (start time 14.00) to Saturday 6 April (finishing at 13.00).Â
Annual MetabERN Board Meeting, 4-6 April 2019 | Frankfurt Read More »
The 2019 SSIEM NGS Course will take place at the University of Barcelona, Faculty of Medicine, 18th to 20th March 2019. The first day will start at 11:30h.
SSIEM NGS Course | 18-20 March 2019 Read More »
L’obiettivo degli incontri è condividere la nostra esperienza in materia di helpline – servizi di ascolto, informazione e orientamento per le malattie rare, e fornire alcuni strumenti per interpretare al meglio il ruolo di ascolto ed empatia richiesto da questo tipo di servizio da parte delle Associazioni.
NS2 – “New Challenges, New Services” | April 5-6 2019 Read More »
SSIEM Academy course will be held in Winterthur (near Zurich), Switzerland on the 29th and 30th April 2019.
SSIEM ACADEMY COURSE | 29 – 30 April 2019 Read More »
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