Initial Diagnosis Process for Fabry Disease

Dear Parent,

Your newborn's screening result for "Fabry Disease" from the newborn screening test has shown a positive result, indicating a possible presence of this disease. For health considerations, further detailed examinations are required to confirm the diagnosis. We will arrange an appointment for you to visit Taipei Veterans General Hospital. The following are the return visit procedures and precautions for the day of your appointment:

◎ Notes for Taipei Veterans General Hospital Outpatient Registration ◎

Please make an appointment for the return visit by phone so that we can provide you with relevant information.

Appointment time: Wednesday and Thursday mornings.

Registration location: First Outpatient Building, 1st floor registration counter for initial diagnosis registration, please fill out the initial diagnosis registration form.

Medical examination location: Lakeside Outpatient Building, 3rd floor

Examination items:

Infants: 3 blood samples and 2 urine samples. Subsidized by the three-in-one form for eugenics and health care, costing NT$1500 for the medical consultation fee.

Adults: 3 blood samples and 2 urine samples. Subsidized by the three-in-one form for eugenics and health care, costing NT$710 for the medical consultation fee.

Please bring enough formula and diapers for the baby, National Health Insurance Card, and wear comfortable walking shoes with the mindset of coming for a "health checkup".

Office phone: 02-28712121#8483 (Ms. Li Pei-yi), 3467 (Ms. Cheng Chih-ya).

When calling, please inform us that you are a suspected newborn screening case for Fabry disease and have questions.

● Diagnosis process for Fabry disease

Contact the coordinator of the Fabry Disease Newborn Screening upon arrival at Taipei Veterans General Hospital.

Initial diagnosis registration (First Outpatient Building, 1st floor), with registration in the pediatric cardiology department under Dr. Li Pi-chang.

Height and weight measurement at the Lakeside Outpatient Building, 3rd floor nursing station. Infants require a urine bag to be attached.

Check-in at Dr. Li Pi-chang's consultation room. Please give the height and weight form to the outpatient nurse, and wait for the doctor to conduct an examination and issue a medical order.

Complete a cardiac ultrasound and electrocardiogram examination.

Doctor informs of preliminary examination report (on the same day).

Pay at the second outpatient building, 1st floor (with a discount of NT$1500 for the three-in-one form for eugenics and health care).

Urine and blood tests at the second outpatient building, 1st floor (collect 2 urine tubes from the laboratory).

All examination reports will be available in about 4 to 6 weeks and will be notified by phone first.

◎ Please fill out the "Initial Diagnosis Registration Form" before registering at the counter for initial diagnosis.

◎ If the baby has not yet been named, please register with the mother's name followed by "son" or "daughter".