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Summary of Edition of 12 May 2022

Report from the NGO Committee for Rare Diseases on the Rare Disease Day event “Rare Diseases: A Global Priority for

How to make rare disease clinical networks more efficient

ERN ITHACA: Call for abstract submission for EURODYSMORPHO

ERN eUROGEN: EUPSA Webinar now online

ERN-RND: Webinars on rare neurological and neuromuscular diseases

VASCERN: Recording of the webinar on HHT and Nosebleeds

ERN ReCONNET: Supplement Rare inside rare in Clinical Experimental Rheumatology

ERN EpiCARE: Call for collaborative genetic research on rare and complex epilepsies

ECRD 2022: Registration open 

RDI informal side-event to the World Health Assembly 

Campaign for the adoption of a Rare Disease strategy in Canada 

Launch of the European Health Data Space

Designing rare disease care pathways in the Republic of Ireland

The economic burden of the neuromyelitis optica spectrum disorder

The national economic burden of rare diseases in the United States in 2019

Committee for Orphan Medicinal Products: Positive opinions for orphan designation

CHMP grants market authorisation for 2 medicines

21 indications granted an orphan designation by the FDA

European Academy of Neurology guidance for developing and reporting clinical practice guidelines on rare neurological

Quality of life of patients with distal renal tubular acidosis treated with ADV7103

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)