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Summary of Edition of 05 October 2022

Results of the 2022 User Satisfaction Survey of OrphaNews

Remembering Prof. Jean-Jacques Cassiman

ERN GENTURIS: Upcoming webinars

ERN TransplantChild: 4th TransplantChild workshop

ERN CRANIO: Study on patient coverage of craniosynostosis in Europe

ERN-EYE: Next ERN-EYE hybrid Workshop

ERN ITHACA: Call for collaboration on DLG4-related synaptopathy

IRDiRC announces the creation of a Regulatory Science Committee

International Conference on Clinical Research Networks for Rare Diseases

Tanzania: A national call for action to address policy and urgent needs of individuals with rare diseases

EMA's announcement on biosimilar medicines interchangeability

EJP RD annual meeting

Burden of phenylketonuria in Latin American patients

Health-related quality of life of X-linked hypophosphatemia in Spain

Lessons learned from the IRD-PT registry

Quality assessment of mobile apps for people with rare diseases

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
Contact Us
Editorial Board: Victoria Hedley, Yann Le Cam, Charlotte Rodwell, Anna Bucsics,  Ivana Cattaneo, Daria Julkowska, Hélène Dollfus, Alexis Arzimanoglou, Holm Graessner, 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)