EJP RD is glad to partner with Alexion’s annual Rare Conversations conference, “Rare Disease Policies: Pioneering the way towards a resilient ecosystem”, that we will partner. The event will reflect on several aspects that may be included in the new legislative framework, trying to answer the question: How to create a resilient rare disease ecosystem for…
EJP RD is glad to announce that the last call for Research Mobility Fellowships is now open until November, 13th, 2022. The call aims to support PhD students, postdocs, and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence. The exchange can be carried out (1) within the same ERN (Full…
IRDiRC, a global collaborative initiative with the vision to enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention, today announced the formation of the Regulatory Science Committee (RSC). The new RSC “brings broad expertise across different stakeholders and geographies allowing…
ERN eUROGEN, ERN ITHACA and ERN ERKNet are organising a webinar on July, 6th 2022, at 18:00 CEST. You can register here: https://register.gotowebinar.com/register/4452634388200656141 During this event, aimed at both healthcare professionals and patient organisations, all uro-nephrological and cardiological aspects of Williams-Beuren Syndrome will be discussed, including clinical scenarios.
ERN eUROGEN is organising a webinar on June, 29th 2022, at 18:00 CEST. This webinar will provide an overview of their activities and an update on the network’s most recent developments. You can register here : https://register.gotowebinar.com/register/4850315649781014540 The event will cover the development of the ERN eUROGEN registry, new features of the clinical patient management system (CPMS) and the possibilities available within…
The webinar on « Composite endpoints including patient relevant endpoints (Quality of Life) » is now available here In this webinar you will learn about: The procedures to combine multiple endpoints and its limitations The properties and the flexibility of the class of generalized pairwise comparison tests The potential advantages and disadvantages of designing a clinical trial…
New opportunity to follow the MOOC on Rare Diseases Diagnostics! Given the enthusiasm raised by the MOOC « Diagnosing Rare Diseases: from the Clinic to Research and back » co-developed by Foundation For Rare Diseases, ERN Ithaca and ERN Genturis in the context of European Joint Programme on Rare Diseases, we have decided to keep it open continuously for enrollment.…
We are happy to invite you to take part in a workshop addressing “Ethics and regulatory considerations for ERN Data Access Committee members”.This workshop is jointly organised by ERICA and EJP RD and will take place online on 30th June from 10 am to 12:30 pm.It primarily aims to train the members of the ERNs Data Access Committee members…
The ProDGNE consortium is organising the ProDGNE Meeting 2022, a multi-stakeholder opportunity to meet in person, discuss impactful research in GNE Myopathy (GNEM) and expand the research network while building a long-term partnership where patients are central partners, key drivers and decision makers in R&D. The meeting will be held on May 31st, 2022 in Portugal (Sala Ágora, NOVA School…
A funded networking event “Regional Cooperation: Conference on new concepts and approaches in lymphoma” is being organised in Belgrade, Serbia on May 27th-29th. This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the 4th round of funding in March 2021. The event will bring together patients…