Following the successful implementation of three Joint Transnational Calls since 2019, EJP RD is glad to announce the upcoming launch on December 14th of the fourth EJP RD Joint Transnational Call (JTC) 2022, aimed at funding multilateral research projects on rare diseases under the EJP-COFUND action. The aim of the call is to enable scientists…
In the context of EJP RD’s ERN Workshops, a hybrid workshop on « contemporary outcome measures in neuromuscular diseases » aimed at understanding the advancement of technologies with digital outcome measures in neuromuscular diseases is being organised by Prof. Sabrina Sacconi of University Hospital Nice. The hybrid event (in-person on site and online by videoconference) will take place over two days on March 4th – 5th,…
In the context of EJP RD’s ERN Workshops, a face-to-face workshop on « Endocrine cancer: A challenge in adults and children » aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute. The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National…
Topic: Anonymisation and pseudonymisation of rare disease patients: legal and technical aspects Date and Time: December 15th, 2021 from 15.00 – 16.00 CET. Organisers/Moderators : Franz Schaefer and Clémence Le Cornec Speakers: Spencer Gibson (University of Leicester), Guillaume Byk (DG-Santé – European Commission) and Antonio Cutillo (Joint Research Center) Description: This workshop will be the first of the…
EJP RD is co-organising a meeting, along with the European Rare Disease Research Coordination and Support Action consortium (ERICA) and the Joint Research Centre (JRC), on Domain specific Common Data Elements (DCDEs) Curation targeted towards clinicians and people with a medical background to join. The online meeting will take place on December 9th, 2021 from 16.00 – 17.00 CET. In…
Rare Disease Ghana Initiative (RDGI), in partnership with Rare Diseases International (RDI), is organising the first African Summit on Rare Diseases with a view to promoting learning and exchange on the state of rare diseases in Africa. The Summit will bring together key stakeholders to discuss challenges and innovations shaping the rare disease landscape in…
The AKU Society, a UK-based charity, has launched a crowdfunding campaign to raise funds for « Leave No Patient Behind – A Global Black Bone Disease Registry » in order to gather information about alkaptonuria (AKU) patients around the world in one single place. Alkaptonuria, also known as AKU or Black Bone Disease, is an extremely rare genetic condition,…
The Fondazione Gianni Benzi is organizing the XIV Foresight Training Course (FTC) on the theme of « The health emergency: Regulatory crash and future perspectives » as a virtual meeting that will take place on December 10th, 2021 from 11.20 – 18.30 CET. The agenda features the following sessions: Session 1 – How the European regulatory framework reacted to the COVID-19 emergency: Extraordinary…
The 1st International Conference on Rare Diseases and Paediatric Research is being organized by 95, Rare Alliance Greece together with Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF) and « Athena » Research Center in Information, Communication and Knowledge Technologies. The Conference is aimed at opening the discussion with all relevant stakeholders on the challenging topic of research…
The European Medicines Agency (EMA) has announced the publication of a guideline on registry-based studies following its adoption by the EMA’s cross-Committees Task Force on registries and the Committee for Medicinal Products for Human Use (CHMP). The guideline provides pharmaceutical organisations with key methods and good regulatory practices on the planning and conduct of studies…