ERN Clinical Patient Management System Webinar to introduce CPMS 17.0 to be held for all ERN Members. CPMS 17.0 will be released at the beginning of March.
Call for collaboration on ultra-rare disorders of sulfur metabolism
This 15th annual symposium is designed for basic, translational and clinical researchers, patient advocacy groups, clinicians, and all others who are interested in learning more about the latest discoveries related to lysosomal diseases and the clinical investigation of these advances.
3rd International Homocystinurias Patient-Expert Meeting on Thursday 28th February – Friday 1st March 2019 in Rome, Italy.
RARE2019 will follow on from the success of its predecessor, addressing the challenges of Rare Diseases Treatments as well as new therapies on the horizon. It will expand on so-called "generic topics", such as clinical trials' design, funding for research, digital health, big data on the one hand and focusing on the individual patients for innovation in both drug development and management.
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.