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Summary of Edition of 30 May 2022

OrphaNews Reader Survey: Give your opinion!

IRDiRC’s tools to assess the impact of diagnoses and therapies on rare disease patients

ERICA new matchmaking tool: Collaborative inter-ERN Research Wall

ERN RARE-LIVER: Webinars and training videos

ERN eUROGEN: Upcoming educational webinars

ERN-LUNG: Virtual school on rare lung diseases with the ERS

ERN EURO-NMD: Call for patient representatives to join EURO-NMD

ERN BOND: Publication in the Journal of Clinical Medicine

ECRD 2022: Registration open

Global Gene Coalition: A global effort to harmonize gene–disease evidence resources

FDA's CDER Launches New Accelerating Rare disease Cures Program

EURORDIS Black Pearl Awards 2023: Nominations open

The communication of genomic results for rare diseases: a comparative study in the Czech Republic and the United Kingdom

Current challenges and opportunities in the care of patients with fibrodysplasia ossificans progressiva

Impact experience of children and adolescents with Fibrodysplasia Ossificans Progressiva

The challenges of Huntington’s disease on patients’ daily lives

Gaucher Registry for development innovation and analysis of Neuronopathic Disease

Credits

OrphaNews, The Newsletter for the Rare Diseases Community.
The production of OrphaNews is realised with the support of Fondation IPSEN, under the aegis of Fondation de France.
Editor-in-chief: Ana Rath
Associate Editor: Charlotte Rodwell
Editor: Nour Zargouni
Editor for Scientific Content: Henri Jautrou
Scientific monitoring: Hélène Jagline
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Editorial Board: Victoria Hedley, Yann Le Cam, Charlotte Rodwell, Anna Bucsics, Franz Schaefer, Ivana Cattaneo, Daria Julkowska, Irene Mathijssen, Hélène Dollfus, Alexis Arzimanoglou, Henri Jautrou

ADVISORY EDITORIAL BOARD
Orphanet Partner Country Representatives: Romi Armando (Argentina), Tamara Sarkisan (Armenia),  Till Voigtlander (Austria), Elfriede Swinnen (Belgium), Rumen Stefanov (Bulgaria), Micheil Innes (Canada), Ingeborg Barisic (Croatia), Marios Antoniades (Cyprus), Milan Macek (Czech Republic), Vallo Tillmann (Estonia), Helena Kääriäinen (Finland), Stefanie Weber (Germany), Eileen Treacy (Ireland), Annick Raas-Rothschild (Israel), Bruno Dallapiccola (Italy), Atsuhiko Kawamoto (Japan), Ieva Malniece (Latvia), Birute Tumiene (Lithuania),  Dijana Plaseska Karanfilska (North Macedonia), Neville Calleja (Malta) Abdelaziz Sefiani (Morocco), Wendy va Zelst-Stam (Netherlands), Stein Are Aksnes (Norway), Krystyna Chrzanowska (Poland), Cristina Rusu (Romania), Sergey Kutsev (Russia), Dragica Radojkovic (Serbia), Gabriela Hrčková (Slovakia), Luca Lovrecic (Slovenia), Gabriela Hrčková (Slovakia), Francesc Palau (Spain), Rula Zain (Sweden), Loredana D'Amato Sizonenko (Switzerland), Dorra H’mida-Ben Brahim (Tunisia), Ugur Ozbek (Turkey), Sarah Stevens (UK)
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Photo credit : Serimedis (unless otherwise stated)