Rare2030: Experts meet to imagine the future of rare diseases
ReadSummary of Edition of 05 December 2019
Editorial
Political news
International News
IRDiRC’s State of Play of research report
ReadRare Voices Australia’s report on “Disability and rare disease: towards person centered care for Australians with rare
ReadEJP RD: Results of 2019 Joint Transnational Call
ReadEJP RD: Call for Proposals 2020 - Two Preliminary Announcements
ReadEJP RD Promotes Global Data Sharing to Bring Hope to Rare Disease Patients
ReadThe online version report of the GA4GH 7th Plenary Meeting is now available
ReadEuropean News
The 2020 Eurordis Photo Award launched
ReadOrphan Drugs
Reimbursement status and recommendations related to orphan drugs in European countries
ReadCommittee for Orphan Medicinal Products meeting report on the review of applications for orphan designation October 2019
ReadCommittee for Orphan Medicinal Products meeting report on the review of applications for orphan designation November
ReadMeeting highlights from the Committee for Medicinal Products for Human Use 11-14 November 2019
ReadBioinformations and biotechnology
Precision medicine research and biobanking in China
ReadScientific news
And also...
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
Contact Us
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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Photo credit : Serimedis (unless otherwise stated)