ERNs in action ! Back from the 4th ERN conference
ReadSpotlight on
Rare Disease Day 2019 theme announced
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Rare Disease Day 2019 theme announced
ReadUN Special Rapporteur calls for support for Rare Disease community in report to UN General Assembly
ReadAustralia’s first National Rare Disease Framework
ReadWest Australia: Telethon 2018 sets a new record
ReadAustralia: Galafold (migalastat) added to the federal government’s Life Saving Drugs Program
ReadChina Alliance for Rare Disease holds inaugural meeting
ReadNew family guide for Duchenne muscular dystrophy
ReadPublic consultation on legislation of medicines for children and rare diseases launched
ReadEuropean Commission launches tender to support development of Clinical Practice Guidelines for ERNs
ReadFirst formal meeting of the Steering Group on Health Promotion, Disease Prevention and Management of Noncommunicable
ReadPatients call for participation in European cooperation on Health Technology Assessment
ReadThe executive summary of the European Conference on Rare Diseases is available
ReadBoard of Member States on European Reference Networks (ERNs)
ReadGuidance from the European Medicines Agency (EMA) on medicines used in children
ReadReport on the application of the European Reference Networks model outside of the rare disease field
ReadMapping health care in rare diseases: The example of epidermolysis bullosa in Germany
ReadUpdate on conect4children progress
ReadRoundtable with health technology industry to discuss EU digital health agenda
ReadEuropean Commission publishes 10 patient errors in cross-border care
ReadImpact of Brexit on European medicines regulation and access to healthcare
ReadOrphaNews, The Newsletter for the Rare Diseases Community.
OrphaNews is supported by the French Muscular Dystrophy Association (AFM).
Editor-in-chief: Ana Rath
Associate Editor: Charlotte Rodwell
Editor: Agathe Franck
Editor for Scientific Content: Agathe Franck
Scientific monitoring: Hélène Jagline
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Editorial Board: Victoria Hedley, Yann Le Cam, Charlotte Rodwell, Anna Bucsics, Franz Schaefer, Ivana Cattaneo
ADVISORY EDITORIAL BOARD
Orphanet Partner Country Representatives: Romi Armando (Argentina), Kristine Hovhannesyan (Armenia), Hugh Dawkins (Australia), Till Voigtlander (Austria), Rumen Stefanov (Bulgaria), Micheil Innes (Canada), Ingeborg Barisic (Croatia), Marios Antoniades (Chyprus), Milan Macek (Czech Republic), Vallo Tillmann (Estonia), Helena Kääriäinen (Finland), Susanne Morlot (Germany), Eileen Treacy (Ireland), Annick Raas-Rothschild (Israel), Bruno Dallapiccola (Italy), Atsuhiko Kawamoto (Japan), Ieva Malniece (Latvia), Birute Tumiene (Lithuania), Abdelaziz Sefiani (Morocco), Gert-Jan van Ommen (Netherlands), Stein Are Aksnes (Norway), Krystyna Chrzanowska (Poland), Mario Carreira (Portugal), Cristina Rusu (Romania), Dragica Radojkovic (Serbia), Laszlo Kovacs (Slovakia), Luca Lovrecic (Slovenia), Francesc Palau (Spain), Désirée Gavhed (Sweden), Loredana D'Amato Sizonenko (Switzerland), Dorra H’mida-Ben Brahim (Tunisia), Sarah Stevens (UK)
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