EJP RD Training Workshop: Genetic Biobanks for rare disease research

University Medical Centre Groningen (UMCG) and Fondazione Telethon (FTELE) along with other EJP RD partners are organizing an EJP RD Training Workshop titled « Genetic Biobanks for Rare Disease Research » targeted at biomedical researchers, medical professionals, and biobank managers who want to learn about genetic biobanks in rare disease research. The training workshop will take place online over…

STARTS TODAY! Third run of MOOC on Diagnosing Rare Diseases: From the Clinic to Research and back

The third run of the MOOC (Massive Open Online Course) “Diagnosing Rare Diseases: from the Clinic to Research and back” co-developed by the European Joint Programme on Rare Diseases, ERN Ithaca, ERN Genturis and the French Foundation for Rare Diseases starts TODAY (April 18th)!  Registrations are free and open at this link.  We specifically encourage medical and biomedical science students to register…

EJP RD Training Webinar: Composite endpoints including patient relevant endpoints (Quality of Life)

As part of the EJP RD Training series, an advanced-level training webinar on the topic « Composite endpoints including patient relevant endpoints (Quality of Life) » aimed at introducing the generalized pairwise comparison ideas and concepts as well as demonstrating its benefit in small sample trials, more particularly in including patient relevant endpoints, such as quality of…