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Summary of Edition of 19 October 2022

Last meeting of the OD4RD project

Expert Conference on Rare Diseases organised by the Czech EU Council Presidency

ERKNet: Upcoming webinars on rare kidney diseases

ERN ITHACA: Call for collaboration on 3M Syndrome

ERN EpiCARE: New rare epilepsies leaflets

ERN-EuroBloodNet: Topic on Focus on Bone Marrow Failure Syndromes

Launch of the Act4RARE toolkit

Economist impact report: Connecting the Dots Embedding Progress on Rare Disease into Healthcare

CORD's call for the establishment of Centres of excellence in Canada

EU Health Policy Platform: Commission selects the 2022 Thematic Networks

Switzerland: Opening of the recognition procedure for new Centres of Reference

Annual costs among patients with dystrophic epidermolysis bullosa

Committee for Orphan Medicinal Products: Positive opinions for orphan designation

CHMP grants market authorisation for 3 medicines

37 indications granted an orphan designation by the FDA

Health insurance literacy and health services access barriers in Niemann–Pick disease

An international study of caregiver-reported burden and quality of life in metachromatic leukodystrophy

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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, 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)