Monthly Archives mai 2022

 7th RE(ACT) Congress and 5th IRDiRC Conference

EJP RD is pleased to announce that the next edition of the 7th RE(ACT) Congress and 5th IRDiRC Conference 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 outstanding speakers and an in-person event with multiple ways of networking!
We look forward to welcoming you to Berlin in March 2023. More information here:

EJP RD’s ERN Workshops: “Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases”

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 prior registration and selection to PhD students, post-doc researchers, senior scientists, young clinicians, investigators and academics and who are employees of or affiliated to an ERN Full Member or affiliated Partner institution.

The training workshop is free of charge and the training methodology will be based on lectures, seminars, and practical sessions, aimed at providing concrete research skills.

Registration closes on May 31st .

More information and registration here

EJP RD training on Genetic biobanks for Rare Disease Research

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 and Tools. The second day will cover the ELSI aspects biobankingEuropean privacy regulations (GDPR)ELSI considerations in genetics, and the stainability of biobanks including a discussion on public-private collaborations.
Registration for the workshop is free but mandatory and open to the international research community, clinicians, medical specialists, RD biobank managers, healthcare professionals and RD patient representatives.
Registration closes on May 29th, and those selected to participate from among the applicants will be informed of their selection on June 2nd.
More information and registration here:

Lauréat Rare Diseases Research (RDR) Challenges #4

Dans le cadre de l’ « European Joint Programme on Rare Diseases » (EJP RD), l’appel innovant « Rare Diseases Research (RDR) Challenges » vise à faciliter et à financer la collaboration entre l’industrie, le monde universitaire, les PME et les associations de patients afin de résoudre des problèmes de recherche spécifiques dans le domaine des maladies rares.

Suite à l’évaluation des dossiers reçus, trois projets ont été sélectionnés co-financés à hauteur de 70% par la communauté européenne et à hauteur de 30% par un ou deux sponsor(s) industriel(s).

Le Challenge #4 concerne le développement d’un test préclinique pour détecter l’instabilité des expansions répétées de microsatellites et le projet lauréat du Challenge #4 dont l’acronyme est TRXassay s’intitule “Development and validation of a novel pre-clinical assay to detect triplet repeat expansions” porté par le Pr Bob Lahue de la National University of Ireland Galway et avec le soutien du sponsor industriel LoQus 23 (

Communiqué de presse 👉🏽

Research Mobility Fellowship funding opportunity

EJP RD is glad to announce 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 ERN at the time when the application is submitted, as well as during the proposed period of the training stay.

Successful applicants should acquire new competences and knowledge related to their research on rare diseases, with a defined research plan and demonstrable benefit to the ERN of the home and/or host institution.

The research mobility fellowships are meant to cover stays of 4 weeks to 6 months duration.

More information here.