Networking event – The anti-IgLON5 disease: Challenges in diagnosis, treatment and pathogenesis of the disease

An EJP RD funded networking event on the rare neurological disease caused by anti-IgLON5 antibodies, discovered in 2014 by researchers from the Hospital Clínic-IDIBAPS is being organised in the context of the Networking Support Scheme (NSS) funding opportunity. The in person meeting will take place over two days on February 24th – 25th at the Esteve Auditorium of the Esther Koplowitz…

Networking Support Scheme (NSS) event on vascular liver diseases and associated complications

A funded networking event on vascular liver diseases and associated complications is being organised to give an update on current clinical and scientific concepts, as well as open questions in the field of vascular liver diseases. This workshop has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the…

ERN Workshop on future research on innovative diagnostics and interdisciplinary treatment for spina bifida (spinal dysraphism)

In the context of EJP RD’s ERN Workshops, an in-person workshop titled « Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment » aimed at sharing participants’ expertise on research in different areas of spinal dysraphism and opening the way to new research projects is being organised by Centre de Référence Spina…

ERN Workshop on contemporary outcome measures in neuromuscular diseases

In the context of EJP RD’s ERN Workshops, a hybrid workshop on « contemporary outcome measures in neuromuscular diseases » aimed at understanding the advancement of technologies with digital outcome measures in neuromuscular diseases is being organised by Prof. Sabrina Sacconi of University Hospital Nice. The hybrid event (in-person on site and online by videoconference) will take place over two days on March 4th – 5th,…

ERN Workshop on endocrine cancer: A challenge in adults and children

In the context of EJP RD’s ERN Workshops, a face-to-face workshop on « Endocrine cancer: A challenge in adults and children » aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute. The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National…

ERN Workshop on anonymisation and pseudonymisation of rare disease patients⁠: Legal and technical aspects

Topic: Anonymisation and pseudonymisation of rare disease patients: legal and technical aspects Date and Time: December 15th, 2021 from 15.00 – 16.00 CET. Organisers/Moderators : Franz Schaefer and Clémence Le Cornec Speakers: Spencer Gibson (University of Leicester), Guillaume Byk (DG-Santé – European Commission) and Antonio Cutillo (Joint Research Center) Description: This workshop will be the first of the…

EJP RD co-organises meeting on Domain specific Common Data Elements (DCDEs) Curation

EJP RD is co-organising a meeting, along with the European Rare Disease Research Coordination and Support Action consortium (ERICA) and the Joint Research Centre (JRC), on Domain specific Common Data Elements (DCDEs) Curation targeted towards clinicians and people with a medical background to join. The online meeting will take place on December 9th, 2021 from 16.00 – 17.00 CET. In…

Joint Transnational Call 2022: Pre-announcement

We are glad to pre-announce the Joint Transnational Call 2022, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases. The aim of the funding opportunity is to enable scientists in different countries to build an effective collaboration on a…