Recent scientific publications by ERNs
ReadEndo-ERN: Apply for the 2025 Clinical Exchange Program
ReadUnderstanding the Endo-ERN Core Registry: A new resource for patients
ReadNew EpiCARE guidelines for submitting to CTIS
ReadRecap of the first EuroBloodNet Preceptorship
ReadNew ReCONNET flyer on videocapillaroscopy
ReadVASCERN Summer School 2024 recap
ReadLeveraging new technologies to accelerate rare disease diagnosis: Recommendations from an IRDiRC Task Force
ReadUnderstanding the rare disease funding landscape: Findings of the IRDiRC Funding Models for Rare Diseases Research Task
ReadTowards better social protection for PLWRD: A new partnership between RDI & the P4H Network
ReadInequities in the US rare disease community: Findings from a NORD & RDDC survey
ReadTowards the implementation of Canada's National Strategy for Drugs for Rare Diseases: Two new reports published
ReadApply to join the ERDERA Multistakeholder Advisory Board
ReadNew EMA & HMA guiding principles on LLM use
ReadPublic consultation on implementing joint scientific consultations under the HTA Regulation
ReadCommission guidance on the validity of clinical studies for Health Technology Assessment
ReadNew CTIS portal now live
ReadEURORDIS: Call for manuscripts on drug repurposing
ReadEMA: Six new market authorisations with an orphan designation from July-September 2024
ReadEMA: Thirty-four orphan designations accorded by the COMP from July to September 2024
ReadFDA: Fifteen new market authorisations with orphan designation granted from July to September 2024
ReadFDA: One hundred thirty-eight new orphan designations approved from July to September 2024
ReadExperience of an Undiagnosed Diseases Program in China to accelerate diagnosis and improve rare disease care
ReadUnderstanding barriers to genomic NBS in Europe: A Delphi consensus study
ReadCommon factors affecting health-related quality of life across rare diseases
ReadAssessing registry feasibility for common core datasets: The SATURN methodology
ReadOrphaNews, 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, Yann Le Cam, Charlotte Rodwell, Anna Bucsics, Ivana Cattaneo, Daria Julkowska, Alexis Arzimanoglou, Holm Graessner, Julie Bruyere-Zrelli, Andrea Osvoll, Stanislav Ostapenko, Valentina Bottarelli, Dave Pearce, Samantha Parker, Alexandra Heumber Perry, Perrine Renard
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Country Correspondants: Gareth Baynam (Australia)
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