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Summary of Edition of 21 October 2019

Key milestone: Political declaration issued by the UN on universal health coverage includes rare diseases for the first

Call for new ERNs member officially launched 

New abstracts translated in Japanese

New 2018 Activity report

Everyday resilience in rare disease networks

India: Analysing the contributions of the Genomics for Understanding Rare Diseases: India Alliance Network

United States : Approval of Rituxan

New project for telecollaboration between healthcare professionals and patients in Cyprus

Brexit: Matt Hancock’s answer to rare diseases patients' open letter

Committee for Orphan Medicinal Products meeting report on the review of applications for orphan designation July 2019

Committee for Orphan Medicinal Products meeting report on the review of applications for orphan designation September

Meeting highlights from the Committee for Medicinal Products for Human Use 22-25 July 2019

Meeting highlights from the Committee for Medicinal Products for Human Use September 2019

FAIRsharing and the Transparency and Openness Promotion Guidelines initiative to improve research transparency

Ireland: From marketing authorisation to completion of health technology assessment appraisal 

Set of policies and actions to advance the rare disease field in Europe

Implementation of integrated care for rare disease patients

Credits

OrphaNews, The Newsletter for the Rare Diseases Community.
OrphaNews is supported by the European Commission through the pilot projet 'Rare 2030 - a participatory foresight study policy-making rare diseases' (PP-1-2-2018-Rare 2030).
Editor-in-chief: Ana Rath
Associate Editor: Charlotte Rodwell
Editor: Florent Simon
Editor for Scientific Content: Claire Bernard
Scientific monitoring: Hélène Jagline
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Editorial Board: Victoria Hedley, Yann Le Cam, Charlotte Rodwell, Anna Bucsics, Franz Schaefer, Ivana Cattaneo

ADVISORY EDITORIAL BOARD
Orphanet Partner Country Representatives: Romi Armando (Argentina), Kristine Hovhannesyan (Armenia), Hugh Dawkins (Australia), Till Voigtlander (Austria), Rumen Stefanov (Bulgaria), Micheil Innes (Canada), Ingeborg Barisic (Croatia), Marios Antoniades (Chyprus), Milan Macek (Czech Republic), Vallo Tillmann (Estonia), Helena Kääriäinen (Finland), Susanne Morlot (Germany), Eileen Treacy (Ireland), Annick Raas-Rothschild (Israel), Bruno Dallapiccola (Italy), Atsuhiko Kawamoto (Japan), Ieva Malniece (Latvia), Birute Tumiene (Lithuania), Abdelaziz Sefiani (Morocco), Gert-Jan van Ommen (Netherlands), Stein Are Aksnes (Norway), Krystyna Chrzanowska (Poland), Mario Carreira (Portugal), Cristina Rusu (Romania), Dragica Radojkovic (Serbia), Laszlo Kovacs (Slovakia), Luca Lovrecic (Slovenia), Francesc Palau (Spain), Désirée Gavhed (Sweden), Loredana D'Amato Sizonenko (Switzerland), Dorra H’mida-Ben Brahim (Tunisia), 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 the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.

Photo credit : Serimedis (unless otherwise stated)