The Rare Disorders Experience Shares with Thailand

Taiwan Foundation for Rare Disorders (TFRD) was invited by Thai Rare Disease Foundation (ThaiRDF) to Bangkok on August 16th, to share the experience with Thai government and rare disease groups. Although it was only one day meeting, it specifically promoted the development of Thailand's rare disease policy.

ThaiRDF celebrated its second anniversary recently, the Foundation was co-founded by the group leaders of Haemophilia, Llysosomal storage disorders (LSDs), other patients’ families and the genetics physicians. President Ms. Preeya Sethi Singhnarula has a child who suffered from Maple syrup urine disease (MSUD) and has been misdiagnosed after birth. She challenged the medical authority and found the diagnosis measure by herself. She then decided to fight for the medical rights with other rare disease families. Dr. Duangrudee Wattanasirichaigoon is actually the behind driving force of ThaiRDF, she has visited TFRD in Taiwan 9 years ago. Ms. Duangrudee was deeply inspired by the founder, Ms. Serena Wu; therefore, after returned to Thailand, she encouraged the patients’ family to help themselves and others. This time, she got sentimental and touched when she met Ms. Serena Wu again.

Recently, Thailand participated in the APEC Rare Disease Development Project    and was selected together with China as a key country for development project. Therefore, Thailand National Health Security Office announces "Rare disease Treatment System Draft" on August 5th and invited TFRD to visit Thailand to introduce the system of Taiwan's rare disease experience.

Led by Dr. Jadet Thammathataree, the Deputy Minister of National Health Security Office, 25 officials and genetics physicians in total to participate the meeting. Ms. Ruth Chen, Executive Director introduced the purpose and future plan of TFRD; Ms. Serena Wu explained the laws and regulations related to rare diseases and shares the difficulties for fight for Prevention of Rare Disease and Orphan Drug Act 20 years ago in Taiwan. Meanwhile, she also pointed out the dilemmas of Taiwan's current rare disease system. In the end, Ms. Serena Wu said: “This trip to Bangkok helped Thai government to emphasis more on rare diseases cases, and we hoped those rare disease families could receive the substantial care in proper way.”

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