New EJP RD – ERN Workshop: Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach

In the context of EJP RD’s ERN Workshops, a workshop entitled “Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach” is being organized by Dr Marco Vitelarro. The in-person event will take place on 22-23 May 2023 at Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, in Milano, Italy. Registration is open here, and closes on March 7th. This workshop is addressed…

Satisfaction Survey for EJP RD services

The European Joint Programme on Rare Diseases (EJP RD) - Work Package 19 (WP19: “Facilitating partnerships and accelerating translation for higher patient impact”, aims to support the RD community to more effectively translate high quality research into high impact interventions for the RD patient community. For that, WP19 offers three main services:  Mentoring for translational research…

Training on Strategies to Foster Solutions of Undiagnosed Rare Disease Cases: Registration Open

As part of the training activities proposed by EJP RD, an 3-day training course on “Training on strategies to foster solutions of undiagnosed rare disease cases” is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners. The training will be held in Rome, Italy on 3-5 April 2023. Through the presentation of sample…

AFM-Téléthon launches Scientific and Medical Research Call for Proposals for 2023

AFM Téléthon (France) launches a scientific call for proposals for 2023, open both to French and foreign teams. The aim is to support: Fundamental Research and Physiopathology of Diseases of the Neuromuscular System Development of Innovative Therapeutic Approaches for Rare Genetic Diseases More information here (PDF) Along with this call, AFM Téléthon also launches a medical research call in neuromuscular disorders, having…

EJP RD Joint Transnational Call 2023: Now Open!

The  European Joint Programme on Rare Diseases launches today the Joint Transnational Call 2023, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases. This year’s topic is: “Natural History Studies addressing unmet needs in Rare Diseases” The aim of the funding opportunity is to enable scientists in…

European Union (EU) Health Summit – Rare Diseases Moonshot launch

Join us on 8th December for the European Health Summit that will take place in Brussels (Belgium) and online to find out more about our journey towards a Rare Disease Moonshot. Online registration is open here: https://lnkd.in/eCGr3ZmX EJP RD Coordinator, Daria Julkowska, will be part of the panel “Building a sustainable R&D ecosystem for rare diseases” along with other keynote speakers. This panel will provide the opportunity…

EJP RD – ERN Workshop: RARE TOGETHER

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…

Survey for SRIA in support for the EP PerMed

The European Partnership for Personalised Medicine (EP PerMed) Drafting Group, representing the European Members States group, is launching an open consultation to validate and receive input for the Strategic Research and Innovation Agenda in support for the European Partnership for Personalised Medicine, EP PerMed. The outcome of the online consultation will be considered for the SRIA finalisation (02/2023)…