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Summary of Edition of 20 June 2022

Global networking for rare diseases: RDI brings together stakeholders on sidelines of the World Health Assembly

OrphaNews Reader Survey: Give your opinion!

European Patient Advocacy Groups (ePAGs) recruitment campaign
 

Launch of Together4RD

ERN ITHACA:  Webinar on ePAGs

ERN BOND: Achondroplasia Spinal Surveys

ERN GENTURIS: Upcoming webinar on ovarian cancer

ERN RARE-LIVER: Publication in Liver International

ERN EpiCARE: Webinars on rare and complex epilepsies

ERN EpiCARE: Participation to the EEC and the EAN Congress

ERN eUROGEN: MoU with the Murdoch Children’s Research Institute in Melbourne

ECRD 2022: Last chance to register!

Canada: Quebec unveils its first policy on rare diseases

Recommendations for effective evidence-based health policy making

Global Survey on Rare Disease Diagnosis

European Commission publishes reports on cross-border healthcare

Stakeholders' consultation on EU4Health priorities, strategic orientations and needs

France: Official number of cases per rare disease

Committee for Orphan Medicinal Products: Positive opinions for orphan designation

CHMP grants market authorisation for 4 medicines

31 indications granted an orphan designation by the FDA

Care coordination strategy for people living with rare conditions

Mental health care of rare disease patients in the UK

Health-related quality of life among children and adults with rare diseases in the US

Evaluating the health-related quality of life of the rare disease population in Hong Kong

The impact of living with spinal muscular atrophy in Malaysia

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)