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.
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.
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