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Summary of Edition of 01 November 2022

Czech Presidency presents a Call to Action on rare diseases

ERKNet: Postgraduate Curriculum 2023-2025

ERN eUROGEN: Upcoming ERN eUROGEN Educational Webinars

ERN EURO-NMD: 2022 Neuromuscular Translational School

ERN ITHACA: EuroNDD - Call for abstracts & registration open

ERN ITHACA: Call for collaboration on MYO18A variants

ERN GENTURIS: Upcoming webinars

2022 User Satisfaction Survey of the Orphanet Website

World Economic Forum white paper on gene therapy

US: RDDC & NORD announce new partnership to identify barriers for underrepresented rare disease patients

EJP RD: New video on rare diseases for ASHG TV

EURORDIS Photo Award 2023

Rare disease curative care expenditure in China

Committee for Orphan Medicinal Products: Positive opinions for orphan designation

CHMP grants market authorisation for 3 medicines

32 indications granted an orphan designation by the FDA

The perception of geneticists in Europe

Cognitive functioning and mental health in children with a primary mitochondrial disease

Lessons learned from rare lysosomal disease registries

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, Julie Bruyere-Zrelli 

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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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.

Photo credit : Serimedis (unless otherwise stated)