AOCCN2017

講演情報

Parallel Session

[PS10] Parallel Session 10: Neuroctaneous Disorder (TS, NF1, SWS)

2017年5月12日(金) 10:30 〜 12:20 Room B (1F Argos C)

Chair: Akira Oka (University of Tokyo), Fei YIN (Xiangya Hospital Central South University )

[PS10-2B-3] Improvement in care of Tuberous sclerosis complex patients in Taiwan

Ming-Yuh Chang (Pediatric Neurology, Changhua Christian Children Hospital, Taiwan)

Tuberous sclerosis complex is a multisystem disease. Due to high incidence of seizure attack, most patients with TSC are regularly follow up by pediatric neurologist. From 10 years ago, Taiwan Tuberous Sclerosis Complex association had been set up by family of TSC patients and few doctors. The care of TSC patients is improving rapidly. Initially, the association published a booklet about the schedule of follow up about study and treatment. They also push the government for improvement in medical care by Rare disease registration. In the recent years, we also see improvement in treatment with new drug use via public health insurance system. So I will introduce the suggested schedule of follow up study and the diagnostic criteria for Rare disease registration of government system in Taiwan.