The ERICA & EJP RD Joint Conference was held on November 21st, 2023, in Amsterdam. This event aimed to unite stakeholders in European Reference Networks (ERNs) and Rare Disease (RD) Research. It brought together medical professionals, researchers, patient advocates, policymakers, and industry representatives interested in improving care and advancing research for rare diseases. Recordings of…
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 13-15 March 2023. Registration is open until 14 January 2024.…
Call for abstracts MARFANS, the French patient association for Marfan and related syndromes, is pleased to announce its first scientific and prospective meeting, Marfans 2035, on April 5th, 2024 which aims to learn about the main research directions in Marfan and related syndromes in the next 10 years, to exchange with researchers and clinicians, and…
A funded networking event, the first Argonaute Syndrome Science & Family conference, has been 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. A report has been prepared to understand more about…
The 2024 edition of the International Myotonic Dystrophy Consortium Meeting (IDMC-14) will be held in Nijmegen from 9-13 April 2024. Please note: deadline early bird registration is January 1, 2024. Registration is open here.More information on the program here. Nijmegen is the oldest city in the Netherlands and one of the places where the disease-causing repeat expansion was identified in the nineties.…
Fondazione Gianni Benzi Onlus, in collaboration with Università degli Studi di Bari Aldo Moro, organises the XVI Foresight Training Course “Repurposing to cover unmet needs: the current scenario in Europe and the proposed changes to the Pharmaceutical Legislation”. It will be focused on drug repurposing, an emerging and dynamic drug development strategy to make new therapies available to…
The 12th edition of the European Conference on Rare Diseases and Orphan Products (ECRD), for which EJP RD is a partner, will take place on 15-16 May 2024, both online and in Brussels! It will be held as an official event under the auspices of the Belgian EU Council Presidency. ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe, aimed at identifying…
The European Medicines Agency (EMA) is set to host an event, the « Multistakeholder Workshop on Patient Registries » on February 12-13, 2024. This two-day hybrid workshop promises to delve into the intricacies of patient registries, offering a unique platform for regulators, registry holders, industry professionals, and a broad spectrum of stakeholders to engage in meaningful discussions.…
Procure4Health is organising a webinar for the 2nd Call for Twinnings practical session and Challenge identification on November 2nd, 2023.By joining this webinar you will get the chance to: – Get to know more about the programme and application process – Receive advice to prepare a good proposal to apply for the 2nd Call for Twinnings…
The 5th International Conference on Rare Diseases (RARE2023) will be held in Budapest, Hungary on 30 November – 1 December 2023. RARE2023 is honored to welcome world-renowned speakers from 15 different countries, all of whom are experts in the field of Rare Diseases, who will present ground-breaking and cutting-edge news on diagnosis, treatments and networking…