On June 30th, 2022 EJP RD has launch the Innovation Management Toolbox (IMT), a free-to-use and curated reference library of resources in rare disease translational medicine that will provide investigators with self-help resources specific to their needs. The database will be maintained actively!
Learn about the IMT: https://www.ejprarediseases.org/innovation-management-toolbox/ Access the IMT: https://imt.ejprarediseases.org/
Video tutorial for users: https://youtu.be/H92b6WEWFhw
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 in rare disease with generalized pairwise comparisons primary analysisYou can watch also webinar on Randomization procedures in Rare Disease Clinical Trials here.
All the available ERN Research related webinars: https://erica-rd.eu/events/webinars/
The Blackswan Foundation , IRDiRC and EJPRD are hosting the 7th RE(ACT) Congress and 5th IRDiRC Conference that will be held in person in Berlin, Germany from March 15th – 18th, 2023.
The joint event “RE(ACT) Congress and IRDiRC Conference 2023” aims to bring together scientific leaders and experts and young scientists from various breakthrough scientific fields to present cutting-edge research, exchange ideas, and discuss rare diseases research policies. Patients and patient organizations committed to research will also be in attendance to share their experiences and perspectives.
The RE(ACT) Congress and IRDiRC Conference 2023 represents an exciting program with [...]
University Medical Centre Groningen (UMCG) and Fondazione Telethon (FTELE) along with other EJP RD partners are organizing an EJP RD Training Workshop titled “Genetic Biobanks for Rare Disease Research” targeted at biomedical researchers, medical professionals, and biobank managers who want to learn about genetic biobanks in rare disease research.
The training workshop will take place over two days on June 14th – 15th from 09.00 – 17.00 CET.
The training workshop is organized as a series of lectures presented by experts in the specific topics. The first day of the training will focus on Data Management [...]
New: continuous enrollment
The third run of the MOOC (Massive Open Online Course) “Diagnosing Rare Diseases: from the Clinic to Research and back” co-developed by EJP RD, ERN Ithaca, ERN GENTURIS and the French Foundation for Rare Diseases has opened on April 18th.
Registration is free and open at this link.
We specifically encourage medical and biomedical science students to register and follow the MOOC. The topics covered include:
The diagnostic process and the types of genetic tests available for rare diseases The differences in rare genetic diseases patient pathways Technological advances for diagnostic research The [...]
EJP RD is glad to announce that today (May 2nd) the opening of the call for Research Mobility Fellowships, which aims to support PhD students, postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.
Deadline: 13 June
The exchange can be carried out (1) within the same ERN (Full Members and Affiliated Partners), (2) between different ERNs (Full Members and Affiliated Partners), or (3) between ERN Full Members / Affiliated Partners and non-ERN institutions.
Either home or host (secondment) institution must be a Full Member or Affiliated Partner of an [...]
In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases” aimed at facilitating discussion and exchange of knowledge on the M&S methodologies and strategies as innovative and promising enough for facing complex multifactorial or rare diseases and conditions that require highly specialised treatments and resources is being organised by Donato Bonifazi of the Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF).
The in-person event will take place over two days on July 4th – 5th at the Hotel Excelsior in Bari, Italy.
The workshop is open by [...]
International Summer School on Rare Disease Registries and FAIRification of data, 26th-30th September 2022, Istituto Superiore di Sanità (ISS), Rome
REGISTRATION IS NOW OPEN HERE until the 13th of April 2022.
26th-30th September 2022. This course is foreseen as a face-to-face training at Istituto Superiore di Sanità Rome, with the eventuality of an online adaptation, according to the evolution of the pandemic situation or of other adverse conditions that might occur. The face-to-face or online delivery of the training course will be decided and communicated to the selected participants by the 3rd of May 2022.