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Summary of Edition of 06 July 2022

ECRD2022 : A week to make a better future for rare diseases possible

Rare Diseases Virtual Hub for Ukraine

ERN ReCONNET: Recording of the webinar on Sjögren’s syndrome

Endo-ERN: First Endo-ERN clinical practice guideline

ERN ITHACA: Call for collaboration on AUTS2 syndrome

ERN ITHACA: Call for collaboration on the NFIC-related disorder

ERN EpiCARE: Webinars on rare and complex epilepsies

ERN-RND: Webinars on rare neurological and neuromuscular diseases

Orphadata.org becomes Orphadata.com : New and easier-to-use website now live 

ORPHAcodes: Orphanet Nomenclature Pack 2022 now available

Online community for ROHHAD Syndrome by RareConnect

Australia: A guide for rare disease organisation leaders

EU4Health Work Programme for 2022

Summary of the conference on the new Regulation on Health Technology Assessment

Access to social services for undiagnosed rare disease patients in France

Educational needs of emergency physicians on rare diseases in China

Quality of life and illness perceptions in patients with TANGO2 disorder and their parents

The effects of patient involvement in rare diseases research in Norway

RWE4Decisions' questionnaire on national data sources

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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Disclaimer: The content of newsletter represents the views of the Editorial Board only and is his/her sole responsibility; it cannot be considered to reflect the views of its financers.

Photo credit : Serimedis (unless otherwise stated)