Literature DB >> 25520006

An Asia pacific alliance for rare diseases.

Durhane Wong-Rieger1, William Claxton, Richard Vines, Carmencita Padilla, Kin Ping Tsang, Lucy Hickinbotham.   

Abstract

Mesh：

Year:  2015        PMID： 25520006     DOI： 10.1007/s40271-014-0103-y

Source DB:  PubMed          Journal:  Patient        ISSN： 1178-1653            Impact factor:   3.883


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  6 in total

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Journal:  Lancet Oncol       Date:  2013-02-20       Impact factor: 41.316

Review 2.  Orphan drugs: the regulatory environment.

Authors:  Pedro Franco
Journal:  Drug Discov Today       Date:  2012-09-05       Impact factor: 7.851

3.  Involvement of patient organisations in research and development of orphan drugs for rare diseases in europe.

Authors:  M Mavris; Y Le Cam
Journal:  Mol Syndromol       Date:  2012-09-13

4.  EUROPLAN: a project to support the development of national plans on rare diseases in Europe.

Authors:  D Taruscio; A E Gentile; M De Santis; R M Ferrelli; M Posada de la Paz; M Hens; J Huizer; L Fregonese; R Stefanov; V Bottarelli; A Weinman; Y Le Cam; D Gavhed; P Mincarone; K Bushby; R G Frazzica; C Donati; L Vittozzi; E Jessop
Journal:  Public Health Genomics       Date:  2014-02-03       Impact factor: 2.000

5.  A population-based registry as a source of health indicators for rare diseases: the ten-year experience of the Veneto Region's rare diseases registry.

Authors:  Monica Mazzucato; Laura Visonà Dalla Pozza; Silvia Manea; Cinzia Minichiello; Paola Facchin
Journal:  Orphanet J Rare Dis       Date:  2014-03-19       Impact factor: 4.123

6.  A call for action to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region.

Authors:  Swee-Sung Soon; Gilberto Lopes; Hwee-Yong Lim; Durhane Wong-Rieger; Salmah Bahri; Lucy Hickinbotham; Anand Jha; Bor-Sheng Ko; Diana MacDonell; Jasmine Roah-Fang Pwu; Ruby Shih; Ekaphop Sirachainan; Dong-Churl Suh; Janet Wale; Xiao Zhang; Hwee-Lin Wee
Journal:  Orphanet J Rare Dis       Date:  2014-09-16       Impact factor: 4.123
  6 in total
  3 in total

1.  The imperative for patient-centred research to develop better quality services in rare diseases.

Authors:  Karen Facey; Helle Ploug Hansen
Journal:  Patient       Date:  2015-02       Impact factor: 3.883

2.  Moving from Patient Advocacy to Partnership: A Long and Bumpy Road.

Authors:  Durhane Wong-Rieger
Journal:  Patient       Date:  2017-06       Impact factor: 3.883

Review 3.  Global incidence and prevalence of idiopathic pulmonary fibrosis.

Authors:  Toby M Maher; Elisabeth Bendstrup; Louis Dron; Jonathan Langley; Gerald Smith; Javaria Mona Khalid; Haridarshan Patel; Michael Kreuter
Journal:  Respir Res       Date:  2021-07-07
  3 in total

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