Cross-Strait Medical Protection and Policy Meeting

The First Cross-Strait Medical Protection and Policy of Rare Diseases Exchange Meeting

To promote the development of cross-strait policies on rare diseases, the establishment of medical networks and patient care, and patient service promotion of experience sharing, TFRD organized “The First Cross-Strait Medical Protection and Policy of Rare Diseases Exchange Meeting” from March 21 to 25, 2011. Under the guidance of Ms. Xie Li-juan, the consultant of Shanghai Red Cross and the former vice mayor of Shanghai, and Professor Mr. Li Ding-guo, the director of Internal medicine at Xinhua Hospital affiliated to Shanghai Jiaotong University School of Medicine, many scholars, doctors and professionals from civil groups participated in the meeting together.

We invited HPA, NHI and FDA to discuss important issues such as “Drug Administration for Rare Disease”, “Government Results of Rare Disease” and “Health Insurance and Care for Rare Disease”, and we also visited the “Research Center for Rare Disease” and “Logistics Center of Special Nutritional Foods and Emergency Orphan Drug for Rare Disease” in Taipei Veterans General Hospital to understand the care of rare disease patients and the management and delivery of orphan drugs in Taiwan's medical system. Afterwards, we visited “Newborn Screening and Testing Center for Rare Disease” in department of Medical Genetics, National Taiwan University Hospital to learn about the operation of rare disease screening in Taiwan. We also visited the Institute of Biomedical Sciences, Academia Sinica and TSCAA.

In this exchange activity, TFRD arranged many visits and had a meaningful conversation with China through experience sharing from government and private organizations. China has also given recognition to Taiwan’s efforts in patient care and rights protection over the years. TFRD also looks forward to setting up a sound system and strengthening the care for rare disease patients through closer interactions with China.

Translator: Penny Tsai (SMA), Reviewer: Linda Tsai