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Summary of Edition of 10 February 2026

Get ready for Rare Disease Day 2026!

ERNICA-EUPSA study on PROMs

EURO-NMD: Looking back on 2025

Recent articles and resources published by ERNs

ECRD 2026: Submit your poster abstract & register now!

Prof. Ségolène Aymé receives honorary doctorate from KU Leuven

IRDiRC: Calls for experts

Looking back on the International Conference on Clinical Research Networks for Rare Diseases

Canada: Share your opinion on regulatory proposals to simplify access to medicines

USA: C-Path publishes 2025 annual report

ERDERA: Call for experts from underrepresented countries

EURORDIS: Creating a European Blueprint for Rare Diseases

EMA: Learn about the new EU pharmaceutical legislation

EMA: 2025 Human medicines update

The role of patient representatives in Health Technology Assessment

MeDIC: A free database to support drug repurposing

Self-management of rare diseases through a co-created mobile app

Understanding the impact of rare diseases on parental wellbeing

Minimising negative impact when clinical trials are delayed

Screening for rare diseases using information content in electronic health records

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Credits

OrphaNews, The Newsletter for the Rare Diseases Community.
Editor-in-chief: Ana Rath
Associate Editor: Charlotte Rodwell
Editor: Madeline Cuillerier
Scientific editor: Perrine Renard
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Editorial Board: Victoria Hedley, Charlotte Rodwell, Anna Bucsics, Ivana Cattaneo, Daria Julkowska, Alexis Arzimanoglou, Holm Graessner, Julie Bruyère-Zrelli, Julien Poulain, Valentina Bottarelli, Dave Pearce, Samantha Parker, Alexandra Heumber Perry, Perrine Renard

ADVISORY EDITORIAL BOARD
Orphanet Partner Country Representatives: Till Voigtlander (Austria), Annabelle Calomme (Belgium), Rumen Stefanov (Bulgaria), Marios Antoniades (Cyprus), Milan Macek (Czech Republic), Vallo Tillmann (Estonia), Helena Kääriäinen (Finland), Oleg Klivdize (Georgia), Carina Thomas (Germany), Eleftherios Thireos (Greece), Eileen Treacy (Ireland), Annick Raas-Rothschild (Israel), Bruno Dallapiccola (Italy), Atsuhiko Kawamoto (Japan), Gulnara Salavatovna Svyatova (Kazakhstan), Madara Auzenbaha (Latvia), Birute Tumiene (Lithuania), Silvana Masi (Luxembourg), Dijana Plaseska Karanfilska (North Macedonia), Abdelaziz Sefiani (Morocco), Wendy va Zelst-Stam (Netherlands), Stein Are Aksnes (Norway), Krystyna Chrzanowska (Poland), Carla Pereira (Portugal), Cristina Rusu (Romania), Maja Stojiljkovic (Serbia), Luca Lovrecic (Slovenia), Francesc Palau (Spain), Rula Zain (Sweden), Loredana D'Amato Sizonenko (Switzerland), Dorra H’mida-Ben Brahim (Tunisia), Ugur Ozbek (Turkey)

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.