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Patient Advocacy Week

Date: 29 – 01 Dec 2017

Location: Oasia Hotel Downtown, Singapore
Event Category: Round Table Meeting
Illness Group: Rare Disease

27 November to 1 December - 5 days, 46 patient group leaders from 11 Asian countries and more than two dozen Shire employees convened in Singapore for a week-long of Patient Advocacy training conducted by Policy Wisdom, and supported by Rainbow Across Borders (RAB), Asia-Pacific Alliance for Rare Disease Organisations (APARDO) and World Federation of Hemophilia (WFH).

Location map:

27 November to 1 December – 5 days, 46 patient group leaders from 11 Asian countries and more than two dozen Shire employees convened in Singapore for a week-long of Patient Advocacy training conducted by Policy Wisdom, and supported by Rainbow Across Borders (RAB), Asia-Pacific Alliance for Rare Disease Organisations (APARDO) and World Federation of Hemophilia (WFH).

First of its kind, this Shire supported event dedicated to uniting patient groups across Asia would not have been possible without the  participation of the Founders and/or Committee Members from the following local voluntary organisations:


•    Chinese Organization of Rare Disorders (CORD) 
•    Hong Kong Alliance for Rare Diseases (HKARD)
•    Yayasan MPS dan Penyakit Langka Indonesia
•    Korea Organization for Rare Diseases (KORD) 
•    Malaysia Lysosomal Diseases Association (MLDA) 
•    Malaysian Rare Disorders Society (MRDS) 
•    Organization for Rare Diseases India (ORDI)

•    Philippine Society for Orphan Disorders (PSOD)
•    Rare Disorders Society (Singapore) (RDSS)
•    Taiwan Alliance of Patients’ Organizations (TAPO)
•    Taiwan Association of Fabry Disease (TAFD)
•    Taiwan Foundation for Rare Disorders (TFRD) 
•    Thailand Rare Disease Foundation (TRDF) 
•    Vietnam Rare Disease Network (VRDN)

•    Hemophilia Association of Taiwan
•    Hemophilia Home of China
•    Hemophilia Society of Singapore (HSS)
•    Thai Hemophilia Patient's Club
•    Vietnam Hemophilia Association (VHA)
•    Hemophilia Society of Malaysia (HSM)
•    Indonesian Hemophilia Society
•    KOHEM (Korea Hemophilia Association)
 

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