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Summary of Edition of 24 July 2022

Launch of a pilot project for the European Health Data Space

IRDiRC‘s State of Play report 2019-2021

Last chance to become a member of the European Patient Advocacy Groups (ePAGs)

Reminder: ERN-wide survey on the challenges related to pregnancy and family planning in rare diseases

ERN BOND: Webinar recordings online

ERN GUARD-Heart: Educational videos for experts

ERN RARE-Liver: Publication in the Journal of Hepatology

ERN ITHACA: EuroNDD 2023 - Program Building

ERN ITHACA: Call for collaboration on the SLC12A2 syndrome

ERN ITHACA: Webinar recordings available

Orphanet activity report leaflet 2021

A call-to-action by the H3Africa rare diseases working group for increased genomic data generation to solve rare

New Zealand: Call for a national rare disease framework by Rare Disorders NZ

EU Global Health Strategy: Commission launches public consultation

EJP RD launches the Innovation Management Toolbox

EURORDIS' guide for patient involvement in the development of clinical practice guidelines & clinical decision support

Innovation Valencian Agency project for the rare disease community

Committee for Orphan Medicinal Products: Positive opinions for orphan designation

CHMP grants market authorisation for 4 medicines

45 indications granted an orphan designation by the FDA

Experiences of parents of children living with an undiagnosed condition in Western Australia

Health-related quality of life in children with delayed reconstruction of esophageal atresia in Sweden

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)