Upcoming Events

Upcoming Events

March 28th, 2023

ERICA WP4 Clinical Trial Support webinar “Definition of orphan drug by the EMA” Armando Magrelli, Istituto Superiore di Sanità (ISS) Roma, Italy 28th March 2023 12:30 – 13:30 (CET) The so-called ‘orphan drugs’ are intended to treat diseases so rare that sponsors are reluctant to develop them under usual marketing conditions. The process from the discovery of a new molecule to its marketing is long (10 years in average), expensive (several tens of millions of euros) and very uncertain (among [...]

April 3rd - April 5th, 2023(Full)

As part of the training activities proposed by EJP RD, an 3-day training course on “Training on strategies to foster solutions of undiagnosed rare disease cases” is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners. The training will be held in Rome, Italy on 3-5 April 2023. Through the presentation of sample use cases that have long eluded diagnosis, the course will provide participants with with useful tools, instruments and knowledge on novel [...]

April 14th, 2023

ERICA WP4 Clinical Trial Support webinar “Designing and conducting clinical trials in rare diseases – what industries expect for partnering with clinical sites” Diego Ardigò, Chiesi Group Parma, Italy 14th April 2023 12:30-13:30 (CET) The webinar will focus on describing the key elements for success in participating as investigator in an industry sponsored clinical, with a specific emphasis on rare diseases, highlighting the key needs from the industry side and the common reasons for failure. The goal is to get [...]

May 8th - May 9th, 2023

In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “EJP RD – ERN Workshop: RARE TOGETHER” is being organized by Dr Rosanne Smits from Radboud University Medical Center. The in-person event will take place on 8-9 May 2023 at Van der Valk Hotel in Nijmegen-Lent, The Netherlands. Registration is open here, and closes on February 1st. The workshop, open to all research levels and aims to to raise awareness for the psychosocial impact of having a rare [...]

May 18th - May 19th, 2023

Aim: Learning from monogenic diabetes as a model of precision medicine by genetic diagnosis and elaborating a proposal of a study design to apply precision medicine in other rare genetic diseases. Target group: medical doctors, geneticists & molecular researchers affiliated to an European Reference Networks Registration deadline: 23 March