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Summary of Edition of 20 September 2022

Open letter of the rare disease community to the European Commission for a new European strategy on rare diseases

Remembering Dr. Santiago Grisolía (1923-2022)

Open survey for ERNs HCPs on Ukrainian refugees' care

ERN ReCONNET: International Congress on rare and low-prevalence connective tissue diseases

ERN EpiCARE: Webinars on rare and complex epilepsies

ERN ITHACA: Call for interested members to join the Fetal Surgery Work Group

ERN THACA: SOFFOET Best of Meeting

ERN EURO-NMD: New CPMS training videos available

ERN EURO-NMD: World Mitochondrial Awareness Week 2022 webinar series

ERN-RND: Webinars on rare neurological and neuromuscular diseases

ERN eUROGEN: Webinars Annual Survey

RDI's Operational Description of Rare Diseases

Australia: Rare Voices Australia Parliamentary Event

ELIXIR’s 2021 Annual Report

EURORDIS' new website

Trends of clinical development of orphan drugs in China

Stakeholders’ views on drug development for congenital disorders of glycosylation

EURORDIS reiterates its call for harmonised newborn screening programmes across Europe

Preconceptions on newborn genetic screening in China

Caregiver burden for spinal muscular atrophy

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,  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)