Events

A comprehensive questionnaire gathering patient perspectives on clinical trials across the European rare metabolic disease network.

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.

A February 19 training session introducing the new Clinical Patient Management System 17.0 features for all ERN network members.

The February 4-8 annual symposium in Orlando brings together global experts to discuss latest advances in lysosomal disease research.

A Vienna congress uniting global rare disease experts to discuss treatment advances, clinical trials and patient-focused innovation.

Annual MetabERN Board meeting starting on Thursday 4 April (start time 14.00) to Saturday 6 April (finishing at 13.00). 

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.

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.

SSIEM Academy course will be held in Winterthur (near Zurich), Switzerland on the 29th and 30th April 2019.