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ReadRecent scientific publications by ERNs
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ReadRecap of the EuroBloodNet 2024 annual meeting
ReadImproving access to medicines throughout the EU: HTA Regulation comes into force
ReadPublic consultation and call for evidence for EU medical devices evaluation
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ReadResults of the EJP RD retreat on educational needs in clinical trial methodology
ReadIntroducing RealiseD, an IHI project to accelerate clinical trials in rare diseases
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ReadOvercoming financial barriers for innovative medical device development
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ReadEMA: Eighteen orphan designations accorded by the COMP in December 2024
ReadFDA: Thirteen new market authorisations with orphan designation granted in December 2024
ReadFDA: Thirty-six new orphan designations approved in December 2024
ReadChallenges and solutions for rare disease research in low- and middle-income countries
ReadUpdate on the 2025 French Genomic Medicine Initiative
ReadGestaltGAN: AI-driven creation of synthetic patient images
ReadEpidemiology, classification and nomenclature of conditions in China's Second List of Rare Diseases
ReadOrphaNews, The Newsletter for the Rare Diseases Community.
Editor-in-chief: Ana Rath
Associate Editor: Charlotte Rodwell
Editor: Madeline Cuillerier
Scientific editor: Perrine Renard
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Editorial Board: Victoria Hedley, Yann Le Cam, Charlotte Rodwell, Anna Bucsics, Ivana Cattaneo, Daria Julkowska, Alexis Arzimanoglou, Holm Graessner, Julie Bruyere-Zrelli, Andrea Osvoll, Stanislav Ostapenko, Valentina Bottarelli, Dave Pearce, Samantha Parker, Alexandra Heumber Perry, Perrine Renard
ADVISORY EDITORIAL BOARD
Orphanet Partner Country Representatives: Romi Armando (Argentina), Tamara Sarkisan (Armenia), Till Voigtlander (Austria), Elfriede Swinnen (Belgium), Rumen Stefanov (Bulgaria), Ingeborg Barisic (Croatia), Marios Antoniades (Cyprus), Milan Macek (Czech Republic), Vallo Tillmann (Estonia), Helena Kääriäinen (Finland), Stefanie Weber (Germany), Eileen Treacy (Ireland), Annick Raas-Rothschild (Israel), Bruno Dallapiccola (Italy), Atsuhiko Kawamoto (Japan), Madara Auzenbaha (Latvia), Birute Tumiene (Lithuania), Dijana Plaseska Karanfilska (North Macedonia), Neville Calleja (Malta) Abdelaziz Sefiani (Morocco), Wendy va Zelst-Stam (Netherlands), Stein Are Aksnes (Norway), Krystyna Chrzanowska (Poland), Cristina Rusu (Romania), Sergey Kutsev (Russia), Dragica Radojkovic (Serbia), Gabriela Hrčková (Slovakia), Luca Lovrecic (Slovenia), Francesc Palau (Spain), Rula Zain (Sweden), Loredana D'Amato Sizonenko (Switzerland), Dorra H’mida-Ben Brahim (Tunisia), Ugur Ozbek (Turkey), Sarah Stevens (UK)
Country Correspondants: Gareth Baynam (Australia)
Disclaimer: The content of newsletter represents the views of the Editorial Board only and is his/her sole responsibility; it cannot be considered to reflect the views of its financers.