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Summary of Edition of 19 December 2019

Season's greetings from OrphaNews!

The 2019 edition of the Universal Health Coverage day includes rare diseases

The achievements of the European Union Health Commissioner Andriukaitis 5 year mandate

Interview with Prof. Dr. Irene M.J. Mathijssen, Chairwoman of 24 coordinators of the ERNs and ERN Coordinator of

841 new clinical units in hospitals requested to become ERN members

The ERN-EuroBloodNet Board of Network held its 3rd meeting

ASCAT and ERN-EuroBloodNet workshop on Sickle Cell Disease Research Prioritisation

3rd EURO-NMD Annual Meeting 2019

European Conference on Rare Diseases 2020: Call for posters

Orphanet publishes the results of its 2019 Satisfaction Survey

Orphanet report: List of medicinal products for rare diseases in Europe

Conference on Global Globin 2020 Challenge, 2019 edition

Australia: government is investing $15 million for clinical research on rare diseases and rare cancers

European Joint Programme on Rare Diseases (EJP RD) 2020 Call for Proposals

India : Council of Scientific and Industrial Research announced the whole-genome sequencing of a thousand individuals

EJP RD Networking Support Scheme is open

EJP RD innovative Rare Diseases Research Challenges call launched

United States Food and Administration started treatment for Acute hepatic porphyria

Suffering from erythropoietic protoporphyria, a scientist-patient’s personal experiences on patient access to medicines

Targeted neonatal screening of at-risk newborns in line with early diagnosis of sickle cell disease in metropolitan

Patient’ genome and exome sequencing to help in analytics for rare disease diagnostics

A Genocentric Analysis to Discover Mendelian Disorders

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), 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)