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 face-to-face workshop entitled “EJP RD – ERN Workshop: RARE TOGETHER” is being organized by Dr Rosanne Smits from Radboud University Medical Center. The in-person event will take place on 8-9 May 2023 at Van der Valk Hotel in Nijmegen-Lent, The Netherlands. Registration is open here, and closes on February 1st. The workshop, open to all research levels…
In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “EJP RD – ERN Workshop: New Therapeutical Approaches for Inherited Retinal Dystrophies” is being organized by Dr Regina Rodrigo. The in-person event will take place on 27-28 March 2023 at CIPF – Príncipe Felipe Research Center, Eduardo Primo Yúfera, 3, 46012, Valencia, Spain. Registration is open here, and closes…
In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Epidermolysis bullosa: from genes to translation into therapies” is being organized by Prof. Dr. Cristina Has of the University Hospital Freiburg. The in-person event will take place on 23-24 March 2023 in CIBSS – Centre for Integrative Biological Signalling Studies in Freiburg, Germany. Registration is open here, and closes…
We are thrilled to share with you the new EJP RD video produced for ASHG TV which focuses on the value chain: from diagnosis to development of therapies for Rare Diseases. Together, EJP RD Members Dr. Daria Julkowska, Dr. Sonja van Weely, Dr. Ralph Schuster, Anton Ussi, Prof. Franz Schaefer, Dr. Ana Rath, Prof. Rima…
We are glad to announce the launch of the new MOOC entitled “Introduction to translational research for Rare Diseases” will be available. On this five-week course from the European Joint Programme on Rare Diseases, you’ll explore the therapeutic development process from the unique perspective of rare diseases. You will follow the journey from discovery to…
On October 17th, a new MOOC entitled “Introduction to translational research for Rare Diseases” will be available. On this five-week course from the European Joint Programme on Rare Diseases, you’ll explore the therapeutic development process from the unique perspective of rare diseases. You will follow the journey from discovery to approved treatment, learn how therapeutic…
A new article entitled Identifying obstacles hindering the conduct of academic-sponsored trials for drug repurposing on rare-diseases: an analysis of six use cases has been published on September 15th. This paper, in which EJP RD members participated in, identifies hurdles in the set-up of six multinational clinical trials for drug repurposing, as use cases. Read…
The International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD) are jointly organizing a two-day conference on clinical research networks (CRNs) for rare diseases, which will take place on December 1 and 2. The objective of this conference is to gather experts from different continents to increase mutual knowledge…
EJP RD held its annual General Assembly and Consortium Meeting on 13-15 September 2022 in Porto, Portugal. The event gathered over 100 participants from various institutions across Europe and associated countries. It was an opportunity to bring back together EJP RD members to meet in-person. Collaboration, Innovation, Data, Funding & Empowerment are key for the…