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Summary of Edition of 06 February 2020

EURORDIS Black Pearl Awards 2020

Ready, set, go for rare disease day 2020

Rare Disease Day 2020: preparation around the globe underway

Unites States of America

ERN Coordinators met with the European Commission to discuss expansion

ERN eUROGEN includes new affiliated partners

MetabERN experts save a baby suffering from Glycogen Storage Disease

ERN-EuroBloodNet and Eurordis to establish an European Network of Sickle Cell Disease Patients Organisations

ERN-EuroBloodNet and the NCP Cleiss joint efforts to assist an Erasmus student affected by a rare disease

VASCERN’s work on the patient pathways

European Conference on Rare Diseases 2020: Call for posters

Survey on success factors of the Japanese and the United States Orphan Drug Programmes

China's new Drug Administration Law and its impact on medications for rare diseases

2019 EJP RD Joint Transnational Call results are out

EJP opens call for candidates for research mobility fellowship and research training workshop

ORPHA codes and the work of a German university to improve patient quality life

Rare disease registry data of the Italian Fruili Venezia Giuli region

The first case of homozygous familial hypercholesterolaemia in childhood reported in Southeast Europe

Orphan medicine expenditure in Europe

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

Meeting highlights from the Committee for Medicinal Products for Human Use 09-12 December 2019

Experts have identified as top research priority the trial design for Focal Cerebral Arteriopathy rare disease

A new human-on-a-chip approach to better tackle rare diseases

Child behaviors to predict posttraumatic stress disorder for parents of children with Autism Spectrum Disorder and Rare

Rare disease ciliopathies: phenotyping and subjacent similarities for fast and precise diagnoses

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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