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Summary of Edition of 27 February 2026

Rare Disease Day 2026: More than you can imagine

Black Pearl Awards 2026: Honouring the rare disease community

EU Parliamentary Research Services demonstrates added value of a future European Action Plan for Rare Diseases

ERN BOND survey on transition of care

ERN ERKNet survey on blood pressure management in ADPKD

ERN EURO-NMD survey on transition from paediatric to adult care

ERNICA survey on CDH management

Recent articles and resources published by ERNs

ECRD 2026: Last chance to submit your poster abstract!

Updated rare disease and orphan drug overview information on Orphanet

RDI publishes position paper on implementing the WHA Resolution on rare diseases

Promoting meaningful patient engagement in research: Report by Genetic Alliance UK

USA: NORD publishes annual State Report Card

TREAT-NMD: TACT call for applicants

Young advocates: Participate in the upcoming ERDERA training

Rare disease services in Germany: Presentation of the German Rare Disease Centres

The cost of care: Uncovering caregiver financial burden in rare diseases

Addressing regulatory gaps for orphan medical devices in the EU and US

Genome Pathway Managers: Current status of a new role in the French health system

Understanding attitudes towards genetic newborn screening: A systematic review

Exploring possible uses for knowledge graphs in rare disease research

Argentina: Rare disease mortality from 1997-2017

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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.