15:00 – 17:00 CEST (14:00 – 16:00 BST, 09:00 – 11:00 EDT, 22:00 – 00:00 JST), online public event REGISTRATION FORM HERE CONNECTION LINK: It will be sent to registered participants SpeakersGA4GH Phenopackets experts: Lindsay Smith, Peter Robinson, Julius JacobsenELIXIR Phenopackets users: Melanie CourtotEJP RD Phenopackets users: Leslie MatalongaEJP RD Semantic Phenopackets expert: Rajaram Kaliyaperumal Chair: Núria Queralt Rosinach Objectives The workshop aims at solving questions such as: How can Phenopackets be […]
Read MoreOrganiser – Newcastle University ONLINE 7th-8th July 2021 GENERAL INFORMATION The main objective of this workshop is to demonstrate the benefits of adopting the Advisory Committee for Therapeutics (ACT) model in rare disease communities, orientated around the European Reference Network groupings (and sub–domains) and to communicate best practices in this respect from the neuromuscular field. Participants will be given dedicated […]
Read MoreWe are pleased to invite you to the webinar co-organised by EJP RD and the European Commission that will take place on Thursday, 25 March, 10h00 – 11h15 via Microsoft Teams. Title: ‘Supporting the innovation and exploitation activities of transnational research projects on rare diseases’ The registration is free but mandatory; please register here. The […]
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On the 12th and 13th of January, The European Joint Programme on Rare Diseases (EJP RD) held its first Policy Meeting engaging EJP RD partners and numerous external stakeholders. The meeting was an occasion to update on the work done in EJP RD and to to start the discussion on the future of EJPRD through […]
Read MoreMarch 10-12, 2021- online event Neuroacanthocytosis syndromes (NA) are a group of rare, but devastating, neurodegenerative disorders, with Chorea Acanthocytosis as the “core” disease of this family. To date there are no treatments that can halt or slowdown the progression of these diseases. Since these are ultra-rare disease, there is very little or no support […]
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