Upcoming update on MOOC « Diagnosis Rare Diseases: from the clinic to research and back »

The French Foundation for Rare Diseases is delighted to announce the upcoming opening of a new facilitation window of the MOOC “Diagnosis Rare Diseases: from the clinic to research and back” on September 19th. This update will be available until December 3rd 2022. During this period, expert mentors will be actively present on the platform to answer the…

ERN Research Training Workshops funding opportunity now open for applications

The ERN Research Training Workshops funding opportunity is now open for applications until October 1st. 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 topics, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be…

EJP RD « Bring Your Own Omics Data » Workshop pre-registration now open

The EJP RD « Bring Your Own Omics Data » Workshop is now open.  The 2-day workshop will take place on November 17th and 18th 2022, face to face in Nijmegen (Netherlands). Costs for travel and accommodation might be available for participants from ERNs and EJP RD beneficiaries. The « Bring Your Own Omics Data » (BYOOD) Workshop aims to help with optimising and integrating…

Networking Support Scheme (NSS) Event: Argonautes Syndrome Science & Family Conference

A funded networking event, the first Argonaute Syndrome Science & Family conference, is being organized to bring together patient families, researchers and clinicians of the AGO1 and AGO2 communities to facilitate the sharing of knowledge. This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity. The event will be held…

Rare Diseases Research (RDR) Challenge #2: Intranasal Device for Neonates (INDENEO)

EJP RD’s innovative Rare Diseases Research (RDR) Challenges call in partnership with Fondation Maladies Rares was aimed at facilitating and funding collaboration between industry, academia, SMEs, and patient organisations to solve specific research challenges in rare diseases. The second challenge issued under the RDR call was for the development of a delivery system for intranasal administration of biological drugs to neonates. We are glad…

Training Course: Quality assurance, variant interpretation and data management in the NGS diagnostics era

As part of the training activities proposed by the EJP RD, a 3-day training course titled “Quality assurance, variant interpretation and data management in the NGS diagnostics era” is being organised by Universitätsklinikum Tübingen, in close collaboration with EJP-RD task partners, aimed the international research community: clinicians, medical specialist, laboratory scientists (EBMG-registered), junior laboratory scientists, clinical geneticists, policy…

ERN Workshop on Rhabdoid tumors in clinic and research: From basic biology to the patient bed

In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Rhabdoid tumors in clinic and research: From basic biology to the patient bed” aimed at discussing the current clinical standard of treatment in rhabdoid tumors, as well as the controversies in the rhabdoid tumors regimen is being organized by Dr. Pascal Johann of the Universitätsklinikum Augsburg. The in-person event will…