New report from the Second High Level Event of the NGO Committee for Rare Diseases published
ReadSpotlight on
EURORDIS’ launch of a new position on holistic care
ReadOrphanet News
New abstracts translated in Japanese
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New report from the Second High Level Event of the NGO Committee for Rare Diseases published
ReadEURORDIS’ launch of a new position on holistic care
ReadNew abstracts translated in Japanese
ReadThe potential impact of drug shortages on patients
ReadImpact of price negotiation for new drugs in Italy including orphan drugs
ReadSpecial Commission on diagnostic established by the Lancet
ReadAnalysis of the cost and approval of gene and cellular therapies
ReadCost evaluation of Charcot-Marie-Tooth neuropathies patients’ needs
ReadStrategies for drafting guidelines in rare diseases
ReadArtificial intelligence and facial recognition for the discovery of new genetic disorders
ReadDelivery and management of prenatal screening results disclosure
ReadOrphaNews, The Newsletter for the Rare Diseases Community.
OrphaNews is supported by the European Commission through the pilot projet 'Rare 2030 - a participatory foresight study policy-making rare diseases' (PP-1-2-2018-Rare 2030).
Editor-in-chief: Ana Rath
Associate Editor: Charlotte Rodwell
Editor: Florent Simon
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
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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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