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 13-15 March 2023. Registration is open until 14 January 2024.…
As part of the training activities proposed by EJP RD, an international course entitled “Training for patient representatives and advocates on leadership and communication skills” is a 2-day training programme that will take place from October 26th – 27th at MUG in Gdańsk, Poland. Registration is currently open but will close on April 26th. More information and registration here.
The World Duchenne Organization is pleased to announce that thanks to a collaborative initiative driven by their technical partners, FAIR Data Systems in Madrid, a FAIR Training Program will be available online to all those interested in understanding the value and future impact of the FAIR Guiding Principles. This is the outcome of the latest…
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…
Fondazione Gianni Benzi Onlus is jointly organising with Università degli Studi di Bari Aldo Moro the XV Foresight Training Course “Boosting research and innovation in a changing regulatory framework”. It will run as a hybrid meeting on 15-16 December 2022 in Bari, Italy at Sala Leogrande (Ex Palazzo delle Poste, piazza Cesare Battisti 1). The…
The upcoming EJP RD training entitled Biobanking in rare diseases: the Poland experience is now open for registration. The 2-day training will be held on November 28-29th online. The training is dedicated to scientists of biomedical sector who want to learn about biobanking standards in rare disease research.Registration is open until November 10th. Register and…
EURORDIS is delighted to announce that applications for the 2023 edition of the EURORDIS Open Academy Schools are now open. The 2023 edition of the Open Academy Schools will take place in-person from 19-23 June in Barcelona and, following a review of our training offerings, we are excited to announce a new format for our…
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…
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…
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…