We are thrilled to announce a new session of the online course « Diagnosing rare diseases: from the clinic to research and back« , which will be offered for free! Participants will learn about diagnostic research progress, types of genetic tests for rare diseases, and the impact of having or lacking a diagnosis on patients’ lives over…
DATE & VENUE The conference will be a hybrid event (in person and online streaming).Where: Ljubljana, Slovenia, Hotel SlonWhen: 1st – 2nd June 2023 (CEST) SCOPE The Kleefstra Syndrome Scientific Conference 2023: “Moving towards the uptake and use of Artificial Intelligence (AI) in research and clinical work” focuses on Kleefstra syndrome, a rare genetic disorder with app. 1000 diagnosed patients worldwide. Due…
The World Health Organization (WHO) is seeking experts to serve as members of the Strategic Advisory Group of Experts on In Vitro Diagnostics (SAGE IVD). This “Call for Experts” provides information about the advisory group in question, the expert profiles being sought, the process to express interest, and the process of selection. If interested, please…
Attention teenagers aged 12-18 with an interest in health, biomedical research, healthcare, and children’s rights! Join our upcoming workshop to become an active contributor in scientific research and improve healthcare services for all patients. 21-23 June 2023Barcelona, SpainDeadline to show interest: 14 May 2023 Learn about drug development, children’s rights, and patient-centered approaches through case…
The new session of the MOOC « From Lab to Clinic: Translational Research for Rare Diseases » has been launched today. Learn the fascinating journey of translating research into treatments for Rare Diseases. With expert guidance, explore drug discovery, clinical trials, regulatory approval, and challenges in this unique field. Gain insights from patients and experts, understand trial…
Exciting news for researchers, clinicians, and healthcare professionals! The eagerly anticipated MOOC, « From Lab to Clinic: Translational Research for Rare Diseases » is launching on April 17th. This 5-week course offers a unique opportunity to gain insight into the issues, challenges, and opportunities in translating research into treatments for rare disease patients. With just 4 hours…
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…
The European Joint Programme on Rare Diseases, alongside TRANSCAN and the Innovative Health Initiative were selected by ERA LEARN to investigate how partnerships navigate the process of translating research activities into medical and health innovations for the benefit of patients, the European health systems and society. The report is available here. The aim of this…
We empowered a community that deserves to be heard. #RAREvolution Berlin, Germany – 24 March 2023. The seventh edition of the RE(ACT) Congress and the fifth edition of the IRDiRC Conference were held jointly in-person in Berlin (Germany) from 15-18 March 2023. The event was organized by the BLACKSWAN Foundation in collaboration with the International…
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…