EJP RD is co-organising a series of 3 workshops dedicated to drug repurposing for rare disease. Registration links will be provided soon. Registration is free but places are limited. This first session, which will be held on October 21st, is entitled “An introduction to drug repurposing for rare diseases – the benefits, the process and…
EJP RD held its annual General Assembly and Consortium Meeting on 14-16 September 2021. The event gathered over 400 registered participants, with 90 to 120 participants per session. The satisfaction survey showed that 92% of participants were satisfied/very satisfied overall with the meeting. Collaboration, Innovation, Data, Funding & Empowerment are key for the European Joint…
The National Press Foundation is organising a two-day online workshop entitled « Covering Rare Diseases ». The workshop will take place on September 13th-14th. EJP RD and IRDiRC Scientific Secretariat Coordinator Daria Julkowska along with other IRDiRC members Lucia Monaco (IRDiRC Consortium Assembly Chair), Durhane Wong-Rieger, Gareth Baynam, Samuel Agyei Wiafe, Anne Pariser and Ritu Jain will…
The ERN Research Training Workshops funding opportunity is now open for applications until October 4th. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops…
The second run of the MOOC (Massive Open Online Course) “Diagnosing Rare Diseases: from the Clinic to Research and back” co-developed by the European Joint Programme on Rare Diseases, ERN Ithaca, ERN Genturis and the Foundation for Rare Diseases will start on October 4th. Registrations are free and open at this link. 1800 learners from 117 countries (40% outside Europe) joined…
The World Duchenne Organization is organizing an online educational event on Adult Life & Duchenne. The free event on September 7 will be accessible for everybody via Zoom, and is available with live Spanish interpretation. Speakers include Prof. Ros Quinlivan, Dr. Jos Hendriksen, Nicoletta Madia, Elizabeth Vroom and Hlawulani Mkhabela. Apart from these, Duchenne adults from…
The first ever European SCN8A & SCN2A Conference takes place at the University of Bonn (10th-11th September 2021) with a full virtual alternative. This event was organized in the context of the EJP RD Networking Support Scheme. Register here to attend in person Register here to attend online Speakers, agenda, and more information here: https://scn8a.eu/…
As part of the training activities proposed by the EJP RD, a 3-day training course titled “Pluripotent stem cells for rare disease research: banking, data, application” is being organised by Fraunhofer Institute for BiomedicalEngineering and Fondazione Telethon. The course aims at providing an overview on how human pluripotent stem cells can be used as research tools. The fully…
It is with deepest sadness we have learned about the death of our dear colleague Jordi Llinares Garcia.Jordi was the Head of Research and Innovation at the EMA. He was involved in multiple aspects of the EJP RD and IRDiRC and supported rare diseases community.Our sincerest condolences go out to his family and friends at…
As part of Solve-RD, Solving the unsolved rare diseases, a European project H2020 on genetic research, the Health Economics Team of the Economics Laboratory of Dijon (University of Burgundy) organises the “European Conference on the Diffusion of Genomic Medicine: Health Economics & Policy” from May 26th to 28th, 2021. You will find the programme here. Registration is open here. More…