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Summary of Edition of 14 February 2022

EURORDIS Black Pearl Awards kick-off Rare Disease Day

ERN eUROGEN: Webinar programme 2022

ERN-EuroBloodNet: Topic on focus on bone marrow failures syndromes educational programme

ERKNet: Webinars of the Postgraduate Curriculum in Rare Kidney Diseases

EURO-NMD: Series of webinars

VASCERN: Recording of the webinar “Diagnostic and Management Pathway for Venous Malformations”

VASCERN: New study from the Hereditary Haemorrhagic Telangiectasia working group

ERN ITHACA: 32nd European Dysmorphology Meeting

ECRD 2022: Call for poster abstracts submissions open

Ten years of progress and challenges at IRDiRC

EJP RD and C-Path’s collaboration for rare disease research and drug development

Programme of the French Presidency of the Council of the European Union on rare diseases

Entry into application of the Clinical Trials Regulation and launch of CTIS and ACT EU

Commission's draft declaration on digital rights and principles

Repurposing of authorised medicines: pilot to support not-for-profit organisations and academia

Committee for Orphan Medicinal Products: Positive opinions for orphan designation

CHMP grants market authorisation for 3 medicines

37 products granted orphan designation by the FDA

Patient-reported outcomes in children and adolescents with intoxication-type inborn errors of metabolism

Global Alliance for Genomics and Health (GA4GH): Table of Clinical Consent Clauses

Analysis of the number of registered patients with rare diseases in Ukraine

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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, Franz Schaefer, Ivana Cattaneo, Daria Julkowska, Irene Mathijssen, Hélène Dollfus, Alexis Arzimanoglou, Henri Jautrou

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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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