As part of the training activities proposed by the EJP RD, a 3-day training course titled “Pluripotent stem cells for rare disease research: banking, data, application” is being organised by Fraunhofer Institute for BiomedicalEngineering and Fondazione Telethon. The course aims at providing an overview on how human pluripotent stem cells can be used as research tools. The fully…
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It is with deepest sadness we have learned about the death of our dear colleague Jordi Llinares Garcia.Jordi was the Head of Research and Innovation at the EMA. He was involved in multiple aspects of the EJP RD and IRDiRC and supported rare diseases community.Our sincerest condolences go out to his family and friends at…
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The National Organization for Rare Diseases (NORD) is organising its annual NORD Summit 2021, one of the largest multi-stakeholder events in rare disease, bringing together rare disease community stakeholders, including rare disease experts and leaders from patient advocacy groups, government, industry, and academia to discuss the most current and critical topics related to rare diseases…
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The European Confederation of Pharmaceutical Entrepreneurs (EUCOPE) is organising a multi-stakeholder round table discussion on the theme of the future of rare diseases in Europe: Revision of the European Orphan & Paediatric Regulation and impact for the Nordic Rare Disease Community in the context of review of the European legislation on paediatric medicines (EC 1901/2006)…
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The European Forum for Good Clinical Practice (EFGCP) and the Drug Information Association (DIA) are organising the Better Medicines for Children Conference 2021 on the theme of « Global Paediatric Drug Development Challenges and Solutions – The Path Forward ». The fully virtual conference will take place over two days from October 18th – 19th from 11.45 – 18.00 CET. Better Medicines for…
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The Golden Helix Foundation and the Leiden University Medical Center, both partners of the Ubiquitous Pharmacogenomics (U-PGx) project, are co-organising the Personalized Medicine Symposium 2021. The symposium will take place in Leiden, the Netherlands over two days from October 27th – 28th. This international event is open for clinical pharmacologists, hospital pharmacists, general pharmacists, specialists, general practitioners, medical students, laboratory technicians, regulators, healthcare insurers and…
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The European Advanced Translational Research Infrastructure in Medicine (EATRIS) together with the European Patients Forum (EPF), the European AIDS Treatment Group and the European Patients Academy (EUPATI) have co-launched a short anonymous survey on Patient Engagement in Academic Research. Targeted primarily at academic researchers, they encourage any academic researcher regardless of their research focus and…
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The European, Middle Eastern and African Society for Biopreservation and Biobanking (ESBB) and the European Research Infrastructure on Biobanking (BBMRI-ERIC) are jointly organising the Europe Biobank Week 2021 as a Virtual Congress with this year’s theme “Biobanking for our Future – Opportunities Unlocked” representing a unique opportunity to meet representatives in biobanking as well as other…
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The United Nations Political Forum on Sustainable Development (HLPF) is co-organising a High-Level Side Event titled « On the road towards COVID-19 recovery & delivery of the Sustainable Development Goals – Addressing the challenges of persons living with a rare disease as a human rights, sustainable development and equity priority » along with the NGO Committee for…
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The 5th European Aniridia Conference is being organised to enable the sharing of scientific knowledge about the rare genetic eye condition aniridia to prevent sight loss and deal with aniridia’s effects. This workshop has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity. The fully online conference will take place over two days from July 31st…
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