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Summary of Edition of 30 April 2020

Coronavirus and rare diseases: update

EURORDIS raises alert over discrimination of rare disease patients during the pandemic and makes practical suggestions

EURORDIS Rare Barometer survey on rare disease patients' experience of COVID-19

ERN Rita guideline on the complement system

Call for tender: Visits within ERNs for healthcare professionals to improve knowledge and best practices

ERKNet 2020 Annual Meeting

ERNICA consensus conferences

Three workshops selected in the framework of the EJP RD training and support program for ERNs

ECRD 2020 Online: Register and get ready for this unique experience

Australia launched its First National Strategic Plan on rare diseases

The United Kingdom rare diseases strategy updated for the second time

Federated data systems to solve rare diseases

An overview of rare diseases status quo in six Latin American countries

Rare genetic diseases and development of new treatments in Canada

Personalised Medicine Implementation on Europe’s agenda

European transnational collaborations on health research and innovation cloud data

European Beating Cancer Plan

EURORDIS and NORD plead for expeditious research of Covid-19 treatments without orphan drug incentives

Mexiletine case of misuse of orphan drug legislation

Canadian health body and pharmaceutical society’ advocacy for rare diseases price reduction

Machine learning method for more quality of life scores for ultra-rare diseases

Real‐world evidence and real-world data’s important role in the regulation of rare disease decision making in the United

Can mental disorders be considered as rare diseases?

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: Josiane Kijigo
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, Irene Mathijssen, Daria Julkowska, Franz Schaefer, Ivana Cattaneo

ADVISORY EDITORIAL BOARD
Orphanet Partner Country Representatives: Romi Armando (Argentina), Kristine Hovhannesyan (Armenia), Till Voigtlander (Austria), Elfriede Swinnen (Belgium), Rumen Stefanov (Bulgaria), Micheil Innes (Canada), Ingeborg Barisic (Croatia), Marios Antoniades (Cyprus), Milan Macek (Czech Republic), John Oestergaard (Denmark), Vallo Tillmann (Estonia), Helena Kääriäinen (Finland), Susanne Morlot (Germany), Helen Michelakakis (Greece), Eileen Treacy (Ireland), Annick Raas-Rothschild (Israel), Bruno Dallapiccola (Italy), Atsuhiko Kawamoto (Japan), Ieva Malniece (Latvia), André Mégarbane (Lebanon), Birute Tumiene (Lithuania), Dijana PlaseskaKaranfilska (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), Laszlo Kovacs (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)