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Summary of Edition of 19 March 2020

ERN-Clinical Guidelines Programme Launched

ECRD 2020 moves ONLINE

Rare Disease Day – Celebrations Around the World

European Union

Rare Disease Day 2020: European Commission actions in the field of rare diseases

European Joint Programme on Rare Diseases

Canada: An Advisory Committee on rare diseases and orphan drugs created

2020 Student Voice Prize

Rare Disease Day Campaign in the Guardian

Orphanet Journal of Rare Diseases – 2020 Rare Disease Day Quiz

ERN TransplantChild: Challenges in paediatric solid organ and haematopoietic stem cell transplantation

ERN RITA: Outcomes from a survey registries on data harmonisation of healthcare centres on rare immune disorders

2019 EU Commission call for proposals for ERN rare diseases registries: 5 ERN platforms have been approved for funding

Wales: Second meeting of members of Cross Party Group for Rare, Genetic and Undiagnosed Conditions

2020 IRDiRC Roadmap

Chan Zuckerberg Initiative for rare disease patients

Germany is the 21st European country to join the 1+Million Genomes Initiative

ELIXIR Converge project for better data management

First end-to-end cost-effectiveness exome sequencing analysis on rare diseases

Japan granted orphan drug designation to a German therapy, Teponitib

Novel approaches on Genetic Skeletal Disorders being developed despite rare diseases drug development challenges

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

Committee for Orphan Medicinal Products meeting report on the review of applications for orphan designation January 2020

Meeting highlights from the Committee for Medicinal Products for Human Use 27-30-01 January 2020

Sources of trauma for children living with Epidermolysis Bullosa

ELIXIR formal process to identify Core Data Resources

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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