A networking event, funded by EJP RD’s Networking Support Scheme, is being organised in Madrid, Spain on March 23rd-24th. This unprecedented event for the CTNNB1 community aims to bring together healthcare professionals, industry, families, and patient advocacy organizations working together to raise awareness, accelerate the development of effective treatments and improve the lives of those…
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This symposium on inherited arrhythmias is funded by the EJP-RD Networking Support Scheme and will take place in Amsterdam in March 2023. Registration and more information here. The meeting will include talks on cutting edge research from some of the world’s leading investigators in this field. It will also include discussions on developing the new…
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In the context of EJP RD’s ERN Workshops, a workshop entitled “Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)” is being organized by Rīga Stradiņš University. The in-person event, which aims to educate researchers and clinicians on psychological, molecular and administration aspects of HBOC GPS, will take place on 27-28 April 2023 in Riga, Latvia. Registration is open here,…
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ERN eUROGEN are organising a webinar dedicated to healthcare professionals and patient groups on Wednesday, 8 February at 18:00 CET. Dr Eva Amerstorfer, Consultant (Department of Pediatric and Adolescent Surgery, University Hospital Graz, AT) and Dr Inbal Samuk, Director of Colorectal Services (Pediatric and Adolescent Surgery Department, Schneider Children’s Medical Center, Petah Tikva, IL) will present this webinar.…
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IRDiRC launches the Call for Members for the four new Task Forces of the 2023 Roadmap. Check out the newly approved Task Forces: Funding Models to Support the Spectrum of Rare Disease Research and Development The overall objective of this Task Force is to identify how different types of funders make decisions about when to fund at…
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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…
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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…
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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…
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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…
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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…
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