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Summary of Edition of 23 October 2026

Momentum grows for an EU Action Plan on Rare Diseases

ERKNet: Call for new ERKReg Board members

ERN GENTURIS: New resources for individuals with PHTS

VASCERN: Guide for young people growing up with Marfan syndrome

Recent articles and resources published by ERNs

Rare diseases in an ageing world: a policy landscape assessment of 16 countries

New IRDiRC publications on meaningful youth engagement and precompetitive collaboration

Aspire4Rare report proposes a framework for accelerating rare disease diagnosis

Canada: a new consent template to support Indigenous data sovereignty

Australia: RVA responds to changes to National Disability Insurance Scheme

USA: NORD 2026 Rare Impact honourees announced

RDI Youth Leadership Programme: 2027-2028 applications open!

ERDERA: moving from rare disease data policy to implementation

ACT EU advice pilot for clinical trial sponsors to become permanent

New templates for written input on joint clinical assessments

Defining rare: how rare disease definitions impact patient access to treatments

Understanding the diagnostic odyssey in Brazil

Determinants of functional outcomes and work ability for people living with a rare disease

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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
Contact Us
Editorial Board: Alexis Arzimanoglou, Valentina Bottarelli, Julie Bruyère-Zrelli, Anna Bucsics, Ivana Cattaneo, Monica Drum, Holm Graessner, Victoria Hedley, Daria Julkowska, Samantha Parker, Dave Pearce, Julien Poulain, Perrine Renard, Charlotte Rodwell

ADVISORY EDITORIAL BOARD
Orphanet Partner Country Representatives: Carolin Czasch (Austria), Annabelle Calomme (Belgium), Rumen Stefanov (Bulgaria), Milan Macek (Czech Republic), Vallo Tillmann (Estonia), Mikko Seppanene (Finland), Oleg Klivdize (Georgia), Carina Thomas (Germany), Eleftherios Thireos (Greece), Atif Awan (Ireland), Ohad Birk (Israel), Massimo Raponi (Italy), Atsuhiko Kawamoto (Japan), Gulnara Salavatovna Svyatova (Kazakhstan), Madara Auzenbaha (Latvia), Birute Tumiene (Lithuania), Silvana Masi (Luxembourg), Dijana Plaseska Karanfilska (North Macedonia), Wendy va Zelst-Stam (Netherlands), Stein Are Aksnes (Norway), Agnieska Madej-Pilarczyk (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)


The content of newsletter represents the views of the Editorial Board only and is his/her sole responsibility; it can not be considered to reflect the views of its funders. Its funders do not accept any responsibility for use that may be made of the information it contains.

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