Patients who are afflicted with "genetic metabolic disorders" must rely on drugs or special foods their entire lives in order to escape from the possibility of death or even physical and emotional impairment. Most treatments for "genetic metabolic disorders" are based on the principle of "dietary control". Correct dietary control is as effective in saving lives as having access to proper medication.
Thereore, TFRD regularly conducts "Nutritional Classroom" workshops to demonstrate the preparation of different foods, educate the patients through basic nutritional facts.
Additionally, for patients who consume tasteless and monotonous dishes on a long-term basis, we have also published the "Nutrition Handbook” that provides patients, free of charge, nutritional information and recipe regarding the disease and variety in diets. There are currently handbooks on Phenylketonuria and Maple Syrup Urine Disease, Glycogen Storage Disease Type I, Amino Acid Metablic disorders, Homocystinuria, disorders of Urea Cycle, and disorders of Leucine Catabolism.
Since 2003, TFRD has introduced nutritional low protein substitutes such as loprofin protein mix, loprofin egg and egg whites. This allows parents of rare disorders to make low protein cakes on their own. Another item on the list is MTC oil which can also be consumed by patients.
In 2008, TFRD distributed "Low-Protein Food Coupon” specifically for the patients with genetic metabolic disorders, like Phenylketonuria, Maple Syrup Urine Disease, Amino Acid Metablic Disorders and Homocystinuria…etc.; we hope it will improve and enrich the diets of the patients.
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