In order to strengthen the care of rare disease patients and prevent the occurrence of rare diseases, the National Health Administration of the Ministry of Health and Welfare specially commissioned the Genetic Counseling Center of Taipei Veterans General Hospital to implement the "109-111 Year Rare Disease Care Service Plan", which is managed by rare disease cases The doctor understands the patient and family situation, and then provides a full range of medical care services such as disease information, psychological support, nursing consultation and maternity care according to the needs of the individual case, so as to improve the quality of life of rare disease patients and families.
This plan will provide you with the following services based on the evaluation and recommendations of physicians and personal management specialists:
(1) Disease impact (2) Psychological support (3) Maternity care (4) Nursing consultation
What is the definition of a rare disease?
In Taiwan, the prevalence rate of the disease is less than 1/10,000 as the standard for the identification of rare diseases in my country, and the comprehensive identification of "whether genetic counseling is necessary or beneficial to disease prevention, difficulty in diagnosis and treatment, and disease severity" is evaluated. →The list of rare diseases announced by the "Rare Diseases and Drug Review Committee" of the National Health Service, Ministry of Health and Welfare, Executive Yuan
Care Service Process
Please download the following form according to your needs, and fill it out by the patient himself or his legal representative, and then mail, fax, or come to the hospital and hand it over to Beirong Rare Disease Case Manager, thank you.
Consent/Change Application Form
Notification of Disapproval/Suspension of Service
Mailing address: Address: Rare Disease Case Manager, Genetic Counseling Center, Room 8055, 8th Floor, Medical Technology Building, No. 201, Section 2, Shipai Road, Beitou District, Taipei City 11217
Tel: 02-28712121 extension 8483
Fax: 02-28767181
After receiving your consent form, the rare disease care team will conduct needs assessment and follow-up services for you.
If you have any questions, please contact us
Consultation location: Genetic Counseling Center, Room 8055, 8th Floor, Medical Technology Building, Taipei Veterans General Hospital
Consultation time: Monday to Friday 8:30-17:30
Special line: 02-28712121 extension 8483 look for Cookie (who's in charge)
Links to Rare Disease Related Websites
Ministry of Health and Welfare National Health Service
Rare disease notification case statistics table
Ministry of Health and Welfare National Health Service
Association of Friends of Congenital and Metabolic Diseases Concern of the Republic of China
Rare Genetic Diseases Made Easy
Corporate legal person Taiwan Rett's Disease Care Association
Taiwan Fabry Disease Association
Taiwan Spinal Muscular Atrophy Association
Special nutritional food for rare diseases and emergency drug logistics center
(Funds are paid by the National Health Department using tobacco health welfare donations)
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