2023 ERN presentation booklet now available
ReadEuroBloodNet: Enhancing patient experience through international conferences
ReadERKNet: Register for the 4th Postgraduate Curriculum class
ReadVASCERN: Patient-centred HTAD quality measures now online
ReadVASCERN: New Heritable Thoracic Aortic Diseases e-learning course
ReadIRDiRC releases Drug Repurposing Guidebook
ReadWHO updates Essential Diagnostics List
ReadCanada establishes rare disease Advisory Group
ReadAustralia's Rare Care Centre establishes Pilbara Hub
ReadNew Zealand: Reflecting on the My Life Matters campaign
ReadUSA: NIH establishes new data linkage and acquisition centre
ReadEconomic impact of rare diseases in Germany, France and Italy
ReadThe role of rare disease organisations in research and development: Evidence from clinical trials in Europe
ReadInclusion of rare disease patients in priority groups for COVID-19 immunization: Reflections from Brazil
ReadUsing data federation to optimise newborn screening programmes
ReadHealth-related quality of life of rare disease patients in China: results from a nation-wide survey
ReadCoding the undiagnosed: Improving patient visibility throughout the diagnostic odyssey
ReadMobile element insertion detection for re-analysis of undiagnosed patients: A Solve-RD publication
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, Alexis Arzimanoglou, Henri Jautrou, Holm Graessner, Julie Bruyere-Zrelli, Andrea Osvoll, Stanislav Ostapenko, Valentina Bottarelli, Dave Pearce, Samantha Parker, Alexandra Heumber Perry
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.