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Summary of Edition of 21 July 2017

Creation of a national coordination for rare diseases in Switzerland

Orphanet Knowledge Management System, a new interactive tool to improve the quality of Orphanet data

The inventory of rare diseases is available in Polish!

Ségolène Aymé, founder of Orphanet, has received the ESHG Award

Rare disease diagnosis in China

The National Institutes of Health Undiagnosed Diseases Program experience

Perspectives for the Priority review voucher program

Effects of the orphan drug designation on investors

State of play of incentives supporting the development of advanced therapy medicinal products for rare diseases in

Cross border healthcare in Europe: a review from an Italian perspective

RD-Action: identification of mechanisms influencing sustainability, equity and resilience of health systems for rare

Publication of the 2016 activity report and 2017 action plan of EURORDIS

The EMA publishes an action plan for SME and the annual report from the SME Office

Value based pricing: a case study based on sorafenib and axitinib

Status of non-invasive prenatal testing in Japan

The landscape of genetic diseases in Saudi Arabia

Credits

OrphaNews, The Newsletter of the Rare Diseases Community.
OrphaNews is supported by the European Commission's DG SANTE (RD-ACTION Joint Action N° 677024) and the French Muscular Dystrophy Association (AFM)
Editor-in-chief: Kate Bushby, Ana Rath
Editor: Divya Unni, Timothy Hood, Sophie Höhn
Editor for Scientific Content: Sophie Höhn
Contact Us
Editorial Board: Valentina Bottarelli, Teresinha Evangelista, Victoria Hedley, Yann Le Cam, Charlotte Rodwell, Domenica Taruscio, Ariane Weinmann

Advisory Editorial Board: Ségolène Aymé, Anna Bucsics, Paul Boom, Bruno Dallapiccola, Jordi Llinares-Garcia, Adam Heathfield, Alastair Kent, Milan Macek, Till Voigtländer

INTERNATIONAL CORRESPONDENTS
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), Violetta Anastasiadou (Cyprus), Milan Macek (Czech Republic), John Rosendahl Ostergaard (Denmark), Vallo Tillmann (Estonia), Sirpa Ala-Mello (Finland), Joerg Schmidtke (Germany), Eileen Treacy (Ireland), Annick Raas-Rothschild (Israel), Bruno Dallapiccola (Italy), Tomoko Kodama (Japan), Jana Lepiksone (Latvia), André Mégarbané (Lebanon), Vaidutis Kucinskas (Lithuania), Yolande Wagener (Luxembourg), Abdelaziz Sefiani (Morocco), Gert-Jan van Ommen (Netherlands), Stein Are Aksnes (Norway), Malgorzata Krajewska-Walasek (Poland), Paul Nogueira (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 (Tunisia), Ugur Ozbek (Turkey), Sarah Stevens (UK) 
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Disclaimer : This newsletter is part of the project / joint action .677024 / RD-ACTION. which has received funding from the European Union.s Health Programme (2014-2020).
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)