OrphaNews will be back in the new year
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Submit your poster abstract for ECRD 2024
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OrphaNews will be back in the new year
ReadSubmit your poster abstract for ECRD 2024
ReadFirst 2024 Black Pearl awardee announced
ReadProtocol of the Screen4Care project
ReadEURORDIS welcomes proposed amendments on health to EU Treaties
ReadERICA & EJP RD joint conference: Presentations available
ReadELIXIR publishes Scientific Programme for 2024-2028
ReadEJP RD: Training on strategies to foster solutions of undiagnosed rare disease cases
ReadGene therapy pharmacovigilance in the EU
ReadEvaluating compassionate use for rare diseases from 1991-2022
ReadUnderstanding Breakthrough Therapy Designation in the United States
ReadEMA: positive opinions on market authorisation with an orphan designation from July-November 2023
ReadEMA: New positive opinions for orphan designation accorded by the COMP from July-November 2023
ReadFDA: New market authorisations granted from July-November 2023
ReadFDA: New orphan designations approved from July-November 2023
ReadCare coordination in the United Kingdom
ReadThe Monarch Initiative: a platform for diagnosing and understanding genetic conditions
ReadThe MyPART network: engaging patients to study the natural history of rare solid tumours
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
Contact Us
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.