Rett syndrome and Angelman syndrome are rare genetic disorders that affect neurological development. Rett syndrome mostly affects young girls and causes rapid degeneration and delayed development. More than 90% of Rett syndrome cases are caused by a MECP2 mutation. Angelman syndrome is also rare and causes symptoms such as ataxia, seizures, delayed development, expressive language disorder, and hyperactivity. It is caused by a mutation in the UBE3A gene, resulting in loss of function. Individuals with Angelman syndrome are often known for their outgoing personalities and frequent laughter.
Although the genes associated with Rett and Angelman syndromes have been identified, there are currently no known cures for these diseases. Therefore, providing diverse medical care is crucial.
To improve care in Taiwan, a medical team consisting of pediatric neurologists and specialists was established by National Taiwan University Hospital to provide comprehensive care to these patients. The Rett Syndrome and Angelman Syndrome Joint Care Clinic simplifies the complicated process of seeking medical treatment and offers real-time clinical diagnosis and medical resources, while also providing individualized health care plans to improve the quality of life and physical health of patients.
The Rett Syndrome and Angelman Syndrome Joint Care Clinic offers several unique features, including being the first of its kind in Taiwan, reduced registration fees, and partial reimbursement to ease the economic burden of patients. The clinic also provides comprehensive and convenient evaluation counseling, and personalized health care plans based on the latest treatment trends from around the world.
Since May 26, 2014, the Department of Pediatrics at the hospital has been providing the Rett Syndrome Joint Care Clinic. In response to medical demand, it has been upgraded to the Rett Syndrome and Angelman Syndrome Joint Care Clinic since 2021.
Services provided by the clinic include medical evaluation, genetic counseling, developmental assessment, medication management, and individualized rehabilitation and educational programs. The clinic also provides family counseling to help parents and caregivers better understand the disease and develop effective coping strategies.
The joint care clinic operates on the fourth Monday morning of every month at the clinics 34 to 37 on the second floor of the hospital. Patients or their caregivers can contact the clinic's staff through the phone number (02-23123456, extension 271618) for inquiries or suggestions.
The Rett Syndrome and Angelman Syndrome Joint Care Clinic was founded by Professor Wang-Tso Lee. The medical team of the joint care clinic consists of pediatric neurologists, child psychiatrists, pediatric orthopedists, pediatric rehabilitation doctors, pediatric gastroenterologists, pediatric cardiologist, obstetrician-gynecologist, nutritionists, and social workers. These specialists work together to provide comprehensive care to patients, including medical evaluation, genetic counseling, developmental assessment, medication & dietary management, and individualized rehabilitation and educational programs. Family counseling is also available to help parents and caregivers understand the disease and develop effective coping strategies.
The followings are the members of the interdisciplinary care team for Rett Syndrome at our hospital.
Team member |
Specialty |
---|---|
Dr. Wang-Tso Lee |
Pediatric Neurology |
Dr. Lee-Chin Wong |
Pediatric Neurology |
Dr. Wen-Che Tsai |
Pediatric Psychiatry |
Dr. Kuan-Wen Wu |
Pediatric Orthopedics |
Dr. Ting-Ming Wang |
Pediatric Orthopedics |
Dr. Hsiu-Yu Shen |
Pediatric Rehabilitation Medicine |
Dr. Jeng-Yi Shieh |
Pediatric Rehabilitation Medicine |
Dr. Yen-Hsuan Ni |
Pediatric Gastroenterology |
Dr. Chun-An Chen |
Pediatric Cardiology |
Dr. Hsiang Yang |
Dentistry |
Dr. Ming-Yih Wu |
Obstetrics and Gynecology |
Yen-Tsz Chen |
Nutrition |
Shu-Mei Tsai |
Nutrition |
Sueih-Yen Jiang |
Social work |