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Summary of Edition of 30 January 2022

Black Pearl Awardees 2022

ERN RITA: "Producing an Arthritis Value-Framework with Economic Evidence" project granted

ERKNet: Webinars of the Postgraduate Curriculum in Rare Kidney Diseases

ERN ITHACA: Call for collaboration on CNOT3-related neurodevelopmental disorder

Endo-ERN: Past webinars now online

EURO-NMD: Series of webinars

ERN TransplantChild: Survey on Cytomegalovirus in paediatric transplantation

Update of Orphanet Report series on Rare Disease Registries in Europe

Orphanet Report Series on the prevalence and incidence of rare diseases

ECRD 2022: Call for poster abstracts submissions open

United States: Launch of the Rare Disease Clinical Outcome Assessment Consortium

Australia: 2021 Rare Cancers, Rare Diseases and Unmet Need grant recipients

2022 EU4Health Work Programme adopted

EU Member States’ legislation on off-label prescription of medicines

Luxembourg: Orientation Guide for people living with a rare disease

Postmarketing safety of orphan drugs in the United States

The ecosystem of patients with lysosomal storage diseases in Spain

TEHDaS policy forum discusses services expected from European Health Data Space

TEHDaS creates foundation for French-Finnish health data collaboration

Launch of the Healthy Data e-consultation

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, 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)