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Summary of Edition of 29 May 2020

EURORDIS survey on the effects of the coronavirus outbreak on the rare disease community

ERN-EuroBloodNet launched a European collaborative platform on the impact of Covid-19 on patients with red blood

ERN ITHACA’ diagnosis and management telemedicine strategy for rare developmental disorders patients

ERN-RND webinars on rare neurological and neuromuscular diseases

ERN-EYE training to better address the way to help impaired patients within hospitals

European Joint Programme on Rare Diseases’ programs to strengthen its collaboration with ERNs

Suspension of examination of applications for healthcare providers to join ERNs due to Covid-19

ECRD: There is still time to watch the conference online

Snomed International and Orphanet make mapping files available for community evaluation

Orphanet and ERNs collaboration to improve rare diseases patients’ life and to share knowledge on rare diseases

IRDiRC Orphan Drug Development Guidebook project to optimise rare disease drugs development

The status of rare diseases in Malaysia

Qatar: The first anniversary of the establishment of the National Centre for Rare Disease

Rare cancer list reviewed by the European Union Joint Action on Rare Cancers

EURORDIS’ data strategy for ERNs

A study on the opportunity to create an ERN on health care provision and rare pathologies on mobility and globalisation

The cost of Inherited Retinal Diseases in the Republic of Ireland (ROI), and in the United Kingdom (UK)

Three countries’ experiences in the implementation of newborn screening for spinal muscular atrophy

Challenges and approaches for undiagnosed Rare Genetic Diseases

Sociotechnical approach on rare disease diagnosis in complex work systems

Status of rare diseases information sources and healthcare centres detained from the point of view of patients in

Considerations and challenges for rare diseases patient registries

Computerised diagnosis support systems for 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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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)