Porphyria Patient Exchange Between Cross-Strait

At the end of 2018, Dr. Hong-Zhou Guo of Linkou Chang Gung Memorial Hospital was invited by Chinese Organization for Rare Disorders (CORD) to share the experience in treatment of Taiwan’s Porphyria. During the meeting, patients with porphyria from China felt the enormous difference in treatment, testing, medication and caring between cross-strait. Therefore, they facilitated the Porphyria exchange activity this time. Before the exchange activity, Dr. Song-Yun Zhang in Hebei Medical University, Mr. Ru-Fang Huang, the CORD founder, and Ms. Li-Li Xia, along with Ms. Juan Wang of The Porphyria Foundation, who is the Porphyria sufferer patient with porphyria as well, visited TFRD and got to know each other in advances.

“Treatment and care of Porphyria experience and activity of Cross-strait Patients” hold in Proton and Radiation Therapy Center, Linkou Chang Gung Memorial Hospital on July 6th. Besides the visitant from China, there were 25 patients and families from Taiwan to patriciate the meeting as well. On the day, Associate Director, Mr. Ming-Xian Wen introduced the event, and the founder of TFRD, Ms. Serena Wu shared the development of rare disease, current medication system and the psychological journey when she learned of Porphyria for the first time. Next, Dr. Guo explained the symptoms of Porphyria. Four patients' families shared the changes attributed to the progressive medical technology afterward.

Dr. Zhang and Ms. Wang shared the modern medical system of China. Dr. Zhang mentioned that early diagnosis information is insufficient, therefore, actively proclaiming is extremely important. Ms. Wang said there were 60 patients in The Porphyria Foundation so far. After she was confirmed diagnosis, she hoped to increase the confirmed chances in the initial phase, and disposed of the medication related issues.

Translator: Maggie Chao (Glutaric Aciduria), Reviewer: Joy Yin