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Summary of Edition of 29 March 2022

EURORDIS presents strategy to meet needs of Ukrainian RD community

ECRD 2022: Call for poster abstracts submissions extended

ERN EuroBloodNet: Kick-off meeting of the ERICA WP3 project

ERN SKIN: Launch of the 2022 drawing contest

ERN-RND: Study on the impact of offering free educational webinars

ERN ITHACA: Call for collaboration on a novel AXTN1-related neurodevelopmental syndrome

VASCERN: Webinar recordings

VASCERN: Do’s and Don’ts Factsheet on Children’s Compression and Cellulitis flowchart

MetabERN: Study on the consequences of COVID-19 on patients with inherited metabolic diseases

Rare Disease Day: Maintaining momentum around rare diseases

United States: Rare diseases, common challenges

Brazil: The Brazilian Rare Disease Network initiative

FAIRopoly by EJP RD: FAIRification Guidance for ERN Patient Registries

Intellectual property rights and the production of high value medicines in the EU

Drug repositioning trends in rare diseases

Comparative analysis of public reimbursement of orphan drugs in Canada and in the EU

Orphan drug prices and epidemiology of rare diseases in Italy

Physicians' knowledge on specific rare diseases in China

Musculoskeletal diseases in Marfan syndrome: a nationwide registry study in Denmark

Analysis of the French National Registry of Facioscapulohumeral Dystrophy

Global core biodata resource selection

Data sharing holds key to progress on rare diseases in Europe

Patient-facing genetic and genomic mobile apps in the United Kingdom

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)