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   Publication
  Public Advocacy
 
Promote Public Advocacy

In order to raise public awareness about rare diseases, and to help more rare disease patients and families, TFRD has been offering training programs for social workers, medical personnel and nutritionists. Also, TFRD has published several teaching materials and brochres free of charge for schools and hospitals.  Also, in order to encourage research on rare diseases, TFRD also subsidizes research projects and holds conferences.
  Genetic Counseling Center
 
Genetic Counseling Team
It takes good cooperation between doctors, examine personnel, nursing personnel and nutritionists to form a good genetic couseling team.  Genetic counselors play an very important role in the team as well becuase they need to help patients and their families to understand more about their diseases and about genetics. 

Genetic Counseling Center

National Taiwan University Hospital
Taipei Veterans General Hospital
Chang-Gung Memorial Hospital, Linkou branch
Taichung Veterans General Hospital
China Medical University Hospital
National Cheng Kung University Hospital
Chung-Ho Memorial Hospital, Kaohsiung Medical University
Buddhist Tsu Chi Hospital
Mackay Memorial Hospital
Chung Shan Medical University Hospital
Changhua Christian Hospital

  International Diagnostic Testing and Transferring Specimen
 
According to Rare Disease and Orphan Drug Act, the central competent authority may assist institutions, reviewed and approved by the Committee with the following certificates, in their international medical cooperation programs and the central competent authority shall appropriately subsidize the costs.
Subsidized by the Bureau of Health Promotion, Taiwan Foundation for Rare Disorders(TFRD) has established a “International Specimen Testing and Transfer Services Center.”
Bureau of Health Promotion and TFRD will cover 40 % of the total testing cost respectively, and the patient will cover the balance 20% of the testing cost. 
  TFRD's Service I
 
Public Advocacy
Co-produced ??Secrets of the Stars???Xseries report on learning about rare disorders with Public Television

Co-published ??Born Fighters?? sufferers?? storybook with Commonwealth Publishing

Co-produced ??Born Fighters--- stories of rare disorder sufferers?? television program with Public Television and Bureau of Health Promotion

Campus Advocacy
Starting from 2000, TFRD has held 96
campus fairs and 24,706 people have
attended.

Professional Training
Training programs for medical personnel, social workers, teachers of speical education, organizers of patient groups, and volunteers.

Education Publication
Rare Disease book series
Health Passport
Nutrition Handbook
Advocacy Leaflet
Fondation magazine, newsletter and website
  TFRD's Service II
 
Patient Support
Medical and Life support
International Diagnostic Testing
Nutrition Counseling
Employment Service
Supporting Group & Workshop
Scholarship
Friendly Campus Program
Home Visits

Patient Group Incubation
Assist patients to establish formal associations
Subsidize patient groups' activity
  National Rare Disease Network
 
Since 2001, together with Taiwan Human Genetics Society, Dr. Wu-Liang Hwu from of National Taiwan University Hospital and Dr. Shuan-Pei Lin of Mackay Memorial Hospital, our foundation integrated the Human Resources subsidies fund, as provided by the Labor Council Employment Construction Plan, to conduct  an one-year Genetic Counselling Seed Training Program.  TFRD hires graduating students from areas relevant to genetic studies as genetic counsellors. They make clinical rounds at the National Taiwan University Hospital and Mackay Memorial Hospital and receive on-field training by genetic specialists.  Additionally, they assist patients and doctors with relevant services, connecting the patients and the hospital workers.   The foundation also set up the "National Rare Diseases Service Center", with plans to promote such cooperation models to the genetic health counselling centers in central, southern and eastern Taiwan and set up an initial genetic counselling network. 
  Nutrition Counseling
 
In an effort to help patients and their families solve the problems relating to nutrition, TFRD regularly conducts "Nutrition Classroom" workshops to demonstrate the preparation of different foods.  Through the workshops, we educate patients and their families basic nutritional concepts in the hope that they will in turn become familiar with the nutritional contents of different foods.  Additionally, for patients who consume tasteless and monotonous dishes on a long-term basis, TFRD has published the "Nutrition Handbook" that provides patients, free of charge, nutritional information regarding rare metabolic disorders.
  Expanded Newborn Screening Program
 
Congenital Metabolic Disorder
There are a wide variety of inborn errors of metabolic disorders, such as Phenylketonuria, Maple Syrup Urine Disease, Isovaleric Acidemia and Homocystinuria.  Most Inborn errors of metabolic disorders are caused by single gene defects, which can result in abnormalities in synthesis or catabolism of proteins, carbohydrates, or fats. Most are due to a defect in an enzyme or transport protein, which results in a block in a metabolic pathway. Effects are due to accumulations of toxic and harmful substrate before the block.  These diseases don??t have obvious symptoms but problems will emerge as the infant being fed.  Since the accumulated substrate may cause damage to nerve system, early intervention and treatment are critical in preventing infants from suffering from irreversible consequences such as mental retardation and physical disability.
  Orphan Drug and Special Nutrients Supply Network
 
Orphan Drug and Nutritional Supplement Supply Center

In order to procure and transport orphan drug and special nutritients, Bureau of Health Promotion founded” Orphan Drug Distribution Center” and ”Special Nutritional Supplement Supply Center” to facilitate the process of distirbuting drugs. 

Orphan Drug Distribution Center
China Medical University Hospital
886-4-22502121 #2128

Special Nutrients Supply Center
National Taiwan University Hospital
886-2-2312-3456 #6708

Taipei Veteran General Hospital
886-2-2871-2121 #3467
  Legal Protection IV
 
Patients of the official proclaimed rare diseases could apply for reimbursement for the medical expenses occurred in the local medical center or regional teaching hospitals, including expenses of diagnosis, treatment, drugs and special nutritional supply for life maintenance. The reimbursement cap is 70% of actual expenses but families with low-income and inherited rare disease patients are qualified to receive 100% of reimbursement for the expenses of drug and special nutritional supply for life maintenance.
  Legal Protection III
 
Physically and Mentally Disabled Citizens Protection Act is enacted to protect the legal rights, interests, and livelihood of the disabled, secure their opportunity to participate in the social life fairly, consolidate the governmental and private resources, plan and implement all measures of assistance and welfare. Affairs other than prescribed in this Act shall be governed by the regulations of other laws.

  Legal Protection II
 
Rare Disease and Orphan Drug Act is enacted for the prevention and treatment of rare diseases; for the early diagnosis of these diseases; for the intensive care of rare disease patients; for assisting patients gaining access to specific pharmaceuticals for the treatment of these diseases and to special nutrient foods essential to the maintenance of life; and for promoting and ensuring the supply, manufacturing, and research and development of such pharmaceuticals and foods.

  Legal Protection I
 
Genetic Health Law is duly enacted to enforce eugenics, upgrade population quality, protect health of mother and children and bring added happiness to families. 

Premarital Checkup
Complete premarital examination includes general physical checkups, mental and physical evaluation, and family disease history.  If the examination result is abnormal, further evaluations on items such as congenital diseases, psychological diseases or epidemic diseases will be given.

Prenatal Genetic Counseling
Prenatal checkup are divided into two types ??General Prenatal Checkup??, which is established by the ??Handbook for mother-to-be?? published by the Bureau of National Health Insurance.  In cases such as abnormal examination result, or pregnant women with family history of congenital diseases, further prenatal genetic diagnosis will be given.

Newborn Screening
Bureau of Health Promotion and TFRD will cover 40 % of the total testing cost respectively, and the patient will cover the balance 20% of the testing cost.

Genetic Counseling Center

National Taiwan University Hospital
886-2-2312-3456#6708

Taipei Veterans General Hospital
886-2-2871-2121#3467

Mackay Memorial Hospital
886-2-25433535#2547
?B2548

Chang-Gung Memorial Hospital-Linkou branch
886-3-3281200#8278

Taichung Veterans General Hospital
886-4-23592525#4026/ 886-4-23509615

China Medical University Hospital
886-4-22502121#2128

Chung Shan Medical University Hospital
886-4-24739595#2203

National Cheng Kung University Hospital
886-6-2353535#4740

Chung-Ho Memorial Hospital, Kaoshiung Medical University
886-7-3121101#6465/
886-7-3114995

Buddhist Tzu Chi General Hospital
886-3-8563092

  Patient Story
 

Patients' stories reflect in a true and comprehensive way the situation and problems rare disease families in Taiwan may have to face.  Through them, we realize the true meaning and value of life. 

  Q&A about Rare Diseases
 
Briefly speaking, rare diseases suggest diseases with low prevalence. Well-known rare diseases include: Spinocerebellar Ataxia, Phenylketonuria, Mucopolysaccharidoses, Osteogenesis Imperfecta (Glass Dolls), Thalessemia and so on.  The number of patients with these rare diseases varies from hundreds to thousands.  Moreover, there have been only several cases of certain rare diseases in the world.  Most rare diseases are results of genetic defects, and are often described as congenital diseases.  Genetic defects are sometimes caused by sporadic mutation or by inheritance.  However, causes of certain rare diseases still remain unknown. 

Rare diseases are not always diseases with no cure.  In most cases, if diagnosed and treated at early stage, patients may avoid serious results such as mental and growth retardation and physical disability.
  Taiwan Foundation for Rare Disorders
 
TFRD's mission is to improve the life of rare disease patients.  We carry out our mission by assisting rare disease patients to receive proper medical treatment and rehabilitation, securing orphan drugs and special nutrients and fulfilling the needs of rare diseases patients in terms of education, employment and long-term care. As a representative for rare disease patients in Taiwan, TFRD advocates the adoption of relevant legislation that ensures rare disease patients?? rights, encourages rare disease research, and raises public rare disease awareness.
  Faith, Mission and Love
 
"If an organization focuses only on its own problems, what it can convince people is sympathy alone.  Only through moving along the track of social problems can we find strength, confidence, and love."
 
 
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