Exchanging Experience with South Eastern Asia

Exchanging Experience with the Patient Representatives from South Eastern Asia

Patient group representatives from south eastern Asian countries visited TFRD on 18, July 2007. They are from Club Rainbow Singapore, Malaysian Metabolic Society, Indonesia, Hong Kong and Macau. Among them, there are patient families, doctors, and social workers. TFRD's vice president Dr. Min-Chieh Tseng and deputy executive director Ruth Chen introduced TFRD's history and service to our guests. Different from the patient representatives who visited us before, patient representatives this time are from well-established organizations. Through this meeting, TFRD shared the experience in policy advocacy, service and how staffs get involved in servicing patients.

Among the patient organizations, Club Rainbow is the oldest one. It was established in 1992, Club Rainbow (Singapore) is a registered charity committed to helping children suffering from a range of chronic and life-threatening illnesses. They provide a range of free services including a volunteer-based befriended network and counseling, free tuition at home, at Rainbow Family Care Centre on weekends and for children warded at the KK Women's and Children's Hospital, they also offer bedside tuition.

In addition, Club Rainbow also helps in family bonding through a range of social activities. They organize talks for parents on medical and family-related issues. For needy families, the charity also provides financial help. Club Rainbow: http://www.clubrainbow.org/

Malaysian Metabolic Society (MMS) focuses on the newborn screening since newborn screening detects inborn errors of metabolism (IEM) and can help the newborns with IEM live a normal and healthy life by early treatment or intervention. Therefore, MMS has publications that educate Malaysian general public about IEM, why does IEM happens, the symptoms, how to seek diagnosis and treatment. There are about 500 newborns with IEM every year and people should understand that IEM can be treated, and through proper dietary control, theses newborns stand a chance to live a normal life.

Before the meeting, TFRD had arranged a brief meeting for the representatives from Hong Kong with Taiwan Pompe patients, exchanging experience and sharing the improvement after receiving injection. Hong Kong representatives also met a Taiwan EB patient and shared their story of fighting against the disease.