EJP RD Virtual Platform: unleashing the Power of FAIR Resources for Rare Disease Research
EJP RD has produced their new EJP RD Virtual Platform (VP) for the research community. The go-to hub is dedicated for Findable, Accessible, Interoperable, and Reusable (FAIR) resources.
It includes catalogues of resources, registries, biobanks, knowledge bases and tools compliant with agreed standards.
For more information explore the VP Portal now by, clicking here
EJP RD – Free online course: MOOC From Lab to Clinic: Translational Research for Rare Diseases
Launched on October 16th, 2023 and available until December 2nd, 2023 – Online
The French Foundation for Rare Diseases is delighted to announce the upcoming opening of a new facilitation window of the MOOC From Lab to Clinic: Translational Research for Rare Diseases on October 9th. This update will be available until December 2nd 2023.
With expert guidance, explore drug discovery, clinical trials, regulatory approval, and challenges in this unique field. Gain insights from patients and experts, understand trial planning, design, and data sharing. By the end, you’ll have a comprehensive understanding of how evidence is built for safe and effective treatments.
More information, here
EJP RD – Free online course: MOOC – “Diagnosing Rare Diseases: From The Clinic to Research and Back”
Launched on October 16th, 2023 and available until December 8th, 2023 – Online
The new facilitation window for the MOOC Diagnosing Rare Diseases: From The Clinic to Research and Back has been launched on October 16th, 2023. This update will be available until December 8th, 2023.
For more information click here
EJP RD workshop: Managing RD biological sample data in Biobanks
December 13th-14th Milan, Italy
EJP RD is organizing a 2 day immersive workshop on Managing RD biological sample data in Biobanks. This training workshop is the conclusive event of a series of capacity building programs on biobanking put forth by the European Joint Programme on Rare Diseases.
It is aimed at biomedical researchers, medical professionals, and biobank managers who want to learn about the path to follow for exploiting the high value of the biological sample repositories in the RD research. The role of ERNs samples and how to optimise them for networking/ research networks is a basis for the development of the present course.
Registration and more information, here
EURORDIS Open Academy Schools 2024 – Applications are open!
June 3rd-7th, 2024 in Barcelona, Spain
Eurordis organizes its 2024 edition of the Open Academy Schools in-person on 3-7 June in Barcelona.
The programme will include off-site visits to research facilities/hospitals, lots of contact time with faculty and EURORDIS staff and the chance to network with fellow patient advocates and researchers, supporting each other in learning and practice during the training and beyond.
Apply before October 27th for an immersive week of learning.
More information here