Proposed revisions to EU pharma strategy draw mixed reactions
ReadOrphanet News
Orphanet Data for Rare Diseases 2 project kicks off!
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Orphanet Data for Rare Diseases 2 project kicks off!
ReadSIMPATHIC Consortium receives funding to advance medicines repurposing
ReadNordic Rare Disease Summit 2023: Continuing along the Roadmap for Rare Diseases
ReadScreen4Care holds first in-person partners meeting
ReadParticipate in the public consultation on the upcoming European Rare Diseases Partnership
ReadEURORDIS is looking for Digital and Data Advisory Group volunteers
ReadTowards a common approach to economic evaluation of gene therapies
ReadInclusion of Indian patients in international orphan drug trials
ReadPsychosocial impact of novel ATMPs on early recipients
ReadEMA: No positive opinions on market authorisation with an orphan designation in April 2023
ReadEMA: 2 new positive opinions for orphan designation accorded by the COMP in April 2023
ReadFDA: 8 new market authorisations granted in April 2023
ReadFDA: 22 new orphan designations approved in April 2023
ReadQuantifying QoL in rare diseases: The EQ-5D instrument
ReadDecentralised clinical trials: Minimising the burden of research participation
ReadUncovering patient attitudes towards data sharing in sickle cell disorder
ReadOrphaNews, The Newsletter for the Rare Diseases Community.
The production of OrphaNews is supported by the Fondation IPSEN – Fondation de France.
Editor-in-chief: Ana Rath
Associate Editor: Charlotte Rodwell
Editor: Madeline Cuillerier
Editor for Scientific Content: Henri Jautrou
Scientific monitoring: Hélène Jagline
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Editorial Board: Victoria Hedley, Yann Le Cam, Charlotte Rodwell, Anna Bucsics, Ivana Cattaneo, Daria Julkowska, Hélène Dollfus, Alexis Arzimanoglou, Henri Jautrou, Holm Graessner, Julie Bruyere-Zrelli
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.
Photo credit : Serimedis (unless otherwise stated)