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Diagnosis of Five Rare Diseases Reimbursed by Taiwan Foundation for Rare Disorders
For many rare disease patients, the difficulty in obtaining the correct diagnosis is the first dramatic hurdle for them and may take years or even decades to overcome. In order to help patients to receive correct diagnosis, for the past 8 year, TFRD has been cooperating with Bureau of Health Promotion, Department of Health, on helping sending speci ....
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New program: Mommy’s Story Hour campus advocacy project
Being a rare disease patient in school, educational inequality is not rarely seen, which often leads to misunderstanding, low learning performance, or even worse, social exclusion. As we envisage a friendlier learning environment for rare disease children, public advocacy of their rights has always been on top of our agenda. New programs were devel ....
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Low-Protein Food Coupon Is Now on the Go
Dietary control is the most effective treatment for patients with inherited metabolic disorders like Phenylketonuria, Maple Syrup Urine Disease, Amino Acid Metablic Disorders and Homocystinuria, etc. Patients should strictly control the amount of their food intake, especially food that contains protein such as meat, fish, beans, eggs...etc., and ev ....
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Book Release: 3/4 of Happiness
What is happiness? How to define completeness? Can we evaluate its value by comparing numbers and figures? Is 3/4 definitely has less value than 1? Here’s a story of 3/4; a story about how a family of four reacted confronting the impact of rare disease and how happiness derived and shined from incompleteness. This is the story of Ms. Orange a ....
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