ERN Workshop on anonymisation and pseudonymisation of rare disease patients⁠: Legal and technical aspects

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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…

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EJP RD co-organises meeting on Domain specific Common Data Elements (DCDEs) Curation

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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…

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EURORDIS Photo Award 2022

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The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond. The contest is open to all nationalities, ages, and diseases. Every year, hundreds of people from all around the world submit their photos, each…

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XIV Foresight Training Course (FTC): « The health emergency: Regulatory crash and future perspectives »

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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…

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1st International Conference on Rare Diseases and Paediatric Research

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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…

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VASCERN webinar: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas

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VASCERN will hold a webinar on Tuesday November 23rd, 2021 from 5pm to 6pm (CET) entitled: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas with Dr. Andrea DIOCIAIUTI,  VASCA WG member and dermatologist from Bambino Gesù Children’s Hospital, I.R.C.C.S, in Rome, Italy. This will be the the first of a series of four webinars exploring the Patient (Diagnostic and…

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European Medicines Agency (EMA) publishes guideline on registry-based studies

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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…

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