The ERICA & EJP RD Joint Conference was held on November 21st, 2023, in Amsterdam. This event aimed to unite stakeholders in European Reference Networks (ERNs) and Rare Disease (RD) Research. It brought together medical professionals, researchers, patient advocates, policymakers, and industry representatives interested in improving care and advancing research for rare diseases. Recordings of…
The ERICA & EJP RD Joint Conference is scheduled for November 21st, 2023, in Amsterdam. This event aims to unite stakeholders in European Reference Networks (ERNs) and Rare Disease (RD) Research. It will bring together medical professionals, researchers, patient advocates, policymakers, and industry representatives interested in improving care and advancing research for rare diseases. A…
A new EJP RD training course called « ERN Biological Samples in Rare Diseases Research » is set to take place on June 12th in Madrid, Spain, aimed at biomedical researchers, medical professionals, and biobank managers. The course will cover the path to follow for exploiting the high value of the ERNs (European Reference Networks) biological samples…
In the context of EJP RD’s ERN Workshops, a workshop on “on Fetal and Postnatal multidisciplinary management in Rare Diseases – Myelomeningocele (MMC) and Lower urinary tract obstruction (LUTO)” is being organized by Giovanni Mosiello, Rafal Chrzan, Jean Marie Jouannic, and Giovanni Montini. The in-person event, which aims to train healthcare providers from different ERNs involved in the clinical research on MMC…
The deadline for the “Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)” EJP RD- ERN Workshop has been extended until March 24th. Registration is open here. The in-person event, which aims to educate researchers and clinicians on psychological, molecular and administration aspects of HBOC GPS, will take place on 27-28 April…
ERN eUROGEN and ERNICA are organising a 1-hour webinar entitled « Primary Obstructive Megaureter (POM): Predictors of Success and Failure after Balloon Dilatation » on February 22nd, 2023 at 18:00 CET. Registration is open here In this webinar aimed at healthcare professionals, Dr Sonia Pérez-Bertólez and Dr Oriol Martín-Solé, Consultants in the Department of Paediatric Urology at Hospital Sant Joan de Déu Barcelona (ES), will…
The European Rare Disease Research Coordination and Support Action consortium (ERICA) is organising the WP4 Clinical Trial Support webinar “Essential requirements before thinking about a clinical trial” in collaboration with EJP RD and ERN BOND. This webinar will provide you with an overview of what should be done before starting a clinical trial in a study site.…
In the context of EJP RD’s ERN Workshops, a workshop entitled “Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)” is being organized by Rīga Stradiņš University. The in-person event, which aims to educate researchers and clinicians on psychological, molecular and administration aspects of HBOC GPS, will take place on 27-28 April 2023 in Riga, Latvia. Registration is open here,…
ERN eUROGEN are organising a webinar dedicated to healthcare professionals and patient groups on Wednesday, 8 February at 18:00 CET. Dr Eva Amerstorfer, Consultant (Department of Pediatric and Adolescent Surgery, University Hospital Graz, AT) and Dr Inbal Samuk, Director of Colorectal Services (Pediatric and Adolescent Surgery Department, Schneider Children’s Medical Center, Petah Tikva, IL) will present this webinar.…
In the context of EJP RD’s ERN Workshops, a workshop entitled “Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach” is being organized by Dr Marco Vitelarro. The in-person event will take place on 22-23 May 2023 at Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, in Milano, Italy. Registration is open here, and closes on March 7th. This workshop is addressed…