20th Int'l Conference in Taiwan (1)

International Conference on Retrospect and Prospect of Rare Disease in Taiwan

Hundreds of professionals from various countries shed lights on the past and the future of the efforts to help rare disease patients at a conference in Taipei.

A total of 227 participants from domestic and foreign medical sectors, patient groups, governments, pharmaceutical industry attended the “Transforming Rare Lives－International Conference of 20-Year Retrospect and Prospect on Rare Disease in Taiwan.”

The conference was organized by the Taiwan Foundation for Rare Disorders (TFRD) and the Taiwan Human Genetics Society (THGS) at the International Convention Center of Chang Yung-Fa Foundation on October 20th, 2019.

The conference focused on new applications of medical technologies and awareness-raising campaigns among patient groups. These local and foreign experiences shared at the conference allowed the participants to understand the situations and development of rare diseases elsewhere.

Among the 13 speakers invited to the conference, eight are leading foreign figures: Dr. Paul Harmatz from the USA; President of EveryLife Foundation for Rare Diseases Mark Dant; CEO of Canadian Organization for Rare Disorders, Dr. Durhane Wong-Rieger; Chair of Asia-Pacific Economic Cooperation (APEC) Rare Disease Network, Prof. Matthew Bellgard; Associate Professor, Prasobsri Ungthavorn, from the Ministry of Public Health of Thailand; Dr. Vu Chi Dzung from National Hospital of Pediatrics, Vietnam; Chairman of Korean Organization for Rare Diseases Hyun-Min Shin; and Chairman of Malaysia Lysosomal Disease Association Yee Seng Lee.

Other important foreign guests included President of the Asia Pacific Alliance of Rare Disease Organsiations (APARDO) in Singapore Ritu Jain; Dr. Jesus Navarro from the Organización Mexicana de Enfermedades Raras (OMER) in Mexico; Director of patients organization ESPERANTRA from Peru, Karla Ruiz de Castilla; Director of the Department of Health, Western Australia, Kristen Nowak; CEO of the New Zealand Organisation for Rare Disorders (NZORD), Lisa Foster; Rachel Yang and Jane Cai from the Chinese Organization for Rare Disorders (CORD); Director of the China-dolls center for rare disorders, Shuang Zhou; Chairperson of the Hong Kong Alliance for Rare Diseases, Kin-Ping Tsang; Chairwoman of the Tuberous Sclerosis Complex Association of Hong Kong, Pui-Ling Yuen; Allida Muhammad Said from the Malaysian Rare Disorders Society(MRDS); Sanaullah Syed from the Indian Organization for Rare Diseases(I-ORD); Ekawat Suwantaroj from Thailand; Nikki Kitikiti; and Nidhi Swarup from Singapore.

Translator: Jazz Chen (Wiskott-Aldrich syndrome), Reviewer: Alex Chiang