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Summary of Edition of 19 December 2025

Rare Disease Day 2026: The countdown begins!

Towards a European Declaration on rare diseases: Outcomes of the high-level meeting on RD

First ERN monitoring report published

Consultation on Commission's budget proposal unveils strong support for ERNs

ERN ReCONNET survey on self-management of digital ulcers in systemic sclerosis

Recent articles and resources published by ERNs

ECRD 2026: Submit your poster abstract & register now!

IRDiRC survey on genetic laboratory standards

USA: NORD calls for reauthorisation of RPD PRV and other updates

India: IORD outlines priorities following RDI regional webinar

The UN Resolution on rare diseases as a tool for research governance and prioritization

Black Pearl Awards 2026: First awardees announced, Photo Award submissions open

Have your say: ongoing EU consultations

ERDERA re-opens survey on needs for consultancy services

EU Parliament public consultation on rare diseases: Results available

EMA: New market authorisations with an orphan designation from August to October 2025

EMA: New orphan designations accorded by the COMP from August to October 2025

FDA: New market authorisations with orphan designation granted from August to October 2025

FDA: New orphan designations approved from August to October 2025

Determinants of diagnostic delay in Peru

Factors impacting health-related quality of life for children living with a rare disease in China

Basket trials in rare diseases: Current opportunities and challenges

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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.