All the same content, but with an updated feel
ReadOrphaNews will return in September
ReadEnhancing the utility of CPMS: Results from a EURO-NMD pilot
ReadSickle cell disease in the EU: The EuroBloodNet perspective
ReadRecap: EuroBloodNet at the EHA2023 Congress
ReadERN ReCONNET holds first Scientific International Congress
ReadEURO-NMD: New educational videos on rare peripheral neuropathies
ReadRare Disease Moonshot publishes recommendations on clinical trial research needs
ReadEURORDIS launches Young Ambassador Group for Rare Disease Day campaign - applications open!
ReadApply to join the new EURORDIS Mental Wellbeing Partnership Network
ReadEURORDIS unveils new webpage on diagnosis
ReadAssessing the feasibility of the ICER Matrix for grading clinical evidence
ReadDiagnosis of extremely rare conditions: What does the future hold?
ReadImproving caregiver quality of life: The role of illness perceptions
ReadThe E-Merge project: Synchronising registry data for scientific collaboration
ReadRDKG-115: using a knowledge graph to guide medicines repurposing
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)