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Summary of Edition of 25 November 2025

OD4RD2 project holds final meeting

Submit your poster abstract for ECRD 2026!

The role of ERNs in boosting EU competitiveness through public-private partnerships

EuroBloodNet: Sickle Cell Disease Transition Charter presented at EU Parliament

GENTURIS: Patient Journey for neurofibromatosis type 1 now available

ReCONNET: Participate in the Transition of Care survey!

Recent articles and resources published by ERNs

Orphanet Report Series on prevalence, list of rare diseases now available

RDI publishes Framework for Improving Quality of Life in Rare Diseases

Australia: RVA's responses to two draft policies

Australia: Announcing the Rare Care Comprehensive Centre

Listen to Rare Disorders New Zealand's new podcast!

Three videos to support families with an undiagnosed genetic disease

USA: Looking back on the 2025 NORD Breakthrough Summit

Understanding the future Biotech Act for the rare disease community

HTA Regulation: Commission adopts rules for joint clinical assessment of medical devices

EMA launches public consultation on patient experience data

TEHDAS2 wants your opinion: 11 drafts open for public consultation

TEHDAS2: Workshop report on the ethical dimensions of the EHDS now available

ERDERA: Joint Transnational Call 2026 to launch 10 December

IHI draft call 12 text published

Luxembourg: ALAN Annual Report 2024 available now

Improving HTA processes for orphan drugs in Iran: An equity-driven approach

Understanding regulatory sandboxes for rare diseases

Patient passports to improve rare disease care: A pilot study

Australian health professional, scientist and policy-maker perspectives on genomic NBS

Evaluation of a peer support program for caregivers of children with a rare epilepsy

Current uses and trends of digital health technologies in rare disease clinical trials

Establishing a minimum data set for rare diseases in Brazil

Data integration to solve undiagnosed cases: Learning from the Solve-RD Solvathons

Epidemiology of rare diseases at a major hospital in Western China

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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.