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Summary of Edition of 05 December 2019

Rare2030: Experts meet to imagine the future of rare diseases

A call for coordinated efforts to acknowledge a common definition for rare diseases

Educational webinars on rare neurological and neuromuscular diseases organized by ERN-RND and ERN-EuroNMD

An ERN CRANIO patient representative for genetic hearing loss shares his experience with the network

IRDiRC’s State of Play of research report

Rare Voices Australia’s report on “Disability and rare disease: towards person centered care for Australians with rare

EJP RD: Results of 2019 Joint Transnational Call

EJP RD: Call for Proposals 2020 - Two Preliminary Announcements

EJP RD Promotes Global Data Sharing to Bring Hope to Rare Disease Patients

The online version report of the GA4GH 7th Plenary Meeting is now available

The 2020 Eurordis Photo Award launched

Reimbursement status and recommendations related to orphan drugs in European countries

Committee for Orphan Medicinal Products meeting report on the review of applications for orphan designation October 2019

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

Meeting highlights from the Committee for Medicinal Products for Human Use 11-14 November 2019

FAIRshake :  Mount Sinai Researchers Develop Software to Measure the Findability, Accessibility, Interoperability,

The National Institutes of Health updated its data management and sharing policy

Precision medicine research and biobanking in China

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)