Edition of 07 July 2023

In the framework of their ERN workshops, the EJP RD will be holding a workshop on "Urogenital tissue engineering from bedside to bench and back: What do clinicians need and what has basic science to offer." The workshop will be held from 4-5 September 2023 in Utrecht, The Netherlands, and is aimed primarily at ERN eUROGEN members. However, if spots are available, interested patients and scientists from outside the network are invited to attend. Registration is open until 15 July, 2023.

From 25-29 September in Rome, Italy, the Istituto Superiore di Sanità and partners are organising a training course on rare disease registries and FAIRification of data, within the context of the EJP RD. The Summer School consists of two modules, which can be registered for separately: "Rare Disease Registries," from 25-27 September, and "FAIRification of data," from 28-29 September. Three fellowships are available for participants living in an EU-13 Country or in Turkey, with an additional three available for patient representatives. Applications must be submitted by 22 May, 2023.

The EJP RD is organising a workshop on "CDH1 related hereditary diffuse type gastric cancer: The shift from prophylactic total gastrectomy to optimal endoscopic surveillance" as part of their series of ERN workshops. This workshop is open to the entire ERN community, as well as PhD students, researchers, and clinicians interested in the field of hereditary diffuse type gastric cancer. Registration is open until 15 July, 2023.

The 5th International Training Course on "Quality assurance, variant interpretation and data management in the NGS diagnostic era" will be organised from 18-20 October 2023 in the framework of the EJP RD. The main goal of the course is to keep researchers and clinicians up to date on the latest techniques and practices related to next-generation sequencing (NGS) and variant interpretation. It is open to participants from the international research community, including clinicians, specialists, policy makers, and patient representatives (among others) with a basic knowledge in biology or medicine. The deadline to register is June 20th, 2023.

As part of the training activities proposed by the EJP RD, a course aimed at patient representatives titled "Training for patient representatives and advocates on leadership and communication skills" will be offered from 26-27 October 2023. Organised by Medical University of Gdańsk in collaboration with EURORDIS, the 2-day training and preparatory activities aims to teach participants presentation, negotiation and leadership skills through a range of activities.

The training will be free of charge for selected participants. There are also 21 fellowships available to help cover travel expenses up to 435€. The EJP RD is committed to ensuring that the training is accessible to patient representatives and advocates from all backgrounds, with those from Eastern Europe particularly encouraged to apply.

Applications for the training as well as the travel fellowship must be submitted before 26 April 2023.