International Communication

Rare diseases are certainly unavoidable risks for all human beings. People all over the world, no matter what their race and nationality are, may have to face issues regarding rare diseases.
Therefore, TFRD have been contacting many overseas rare disease organizations and medical institutes for exchange of information on designated orphan drugs, long-term care experience, management of rare diseases, and advocacy for rare disease patients' rights.
TFRD expects to improve the quality of life of all rare diseases patients through learning from other international organizations.
Since establishment, TFRD has been referring to other overseas organizations' experience on management of rare diseases and has provided service with certain quality and scale in Taiwan.
So far, TFRD has been a member of National Organization for Rare Disorders (NORD) since 2000 and held International Conference of Rare Disorders and Orphan Drugs on December 2, 2001.
Since 2002, we have also participated in International Conferences of Rare Diseases in Asia.
In December 2005, we held International Conference on Genetic Medicine and Promoting Healthcare for Rare Disorders in December to speak to the world positively.
Also, since 2006, we have partnered with European Organization for Rare Diseases (EURORDIS), expanding the scope of international exchanges to European countries.
In 2008, TFRD has invited several scholars for a medical meeting on AADC disease in January, participated in International Pompe Association (IPA) as a member organization, invited the most authoritative FOP researcher in the world, Dr. Frederick S. Kaplan from The University of Pennsylvania School of Medicine, the author of the fascinating book “Finding the Magic Mountain: Life with Five Glorious Kids and a Rogue Gene Called FOP”, Dr. Carol Zapata-Whelan, and her son with FOP disease, Vincent Whelan, to meet Taiwan FOP patients and FOP researchers and physicians in May, and attended LSD Meeting in Beijing.
In 2009, we also held International Conference of National Policies and Actions on Rare Disease.
In October 2019, we organized Transforming Rare Lives-International Conference of 20-Year Retrospect and Prospect on Rare Disease in Taiwan, including 8 heavyweights and 227 participants from more than 10 countries.
We also assisted Asia Pacific Alliance of Rare Diseases (APARDO) in holding an annual conference in Taiwan, hoping to offer more opportunities for exchange between the organization and patients.
At the end of 2019, we joined APARDO, and the Chairman of TFRD, Shuan-Pei Lin has been a member of the board of directors.