College Courses about RD in Hualien and Taitung

College Courses about Rare Diseases in Hualien and Taitung

In order to make the university students in Hualien and Taitung know more about rare diseases, Taiwan Foundation of Rare Disorders (TFRD) held the “College Courses about Rare Diseases”. There were 66 students participate in the courses, including the students in School of Medicine, Department of Psychology and Counseling and Department of Social Work.

At the beginning of the activity, Dr. Zhu, the pediatrician in Hualien Tzu Chi Hospital, had introduced about the rare diseases of congenital metabolic disorders. During the introduction, the students understood more about the causes, the symptoms, the diagnosis and the treatments. Besides, through the Problem-Oriented learning model, they could do brainstorming and discuss about different rare disease issues enthusiastically.

Afterwards, professor Weng from National Dong Hwa University Psychological Counseling Center leading the students to experience the mental impacts of the patients and the families which the rare diseases caused. Then, Dietitian Weng took the recipes of the patients with Amino Acid, carbohydrate and lipid metabolic abnormality for example, making the students learn about the differences between special diets and general diets. Furthermore, Dietitian Weng even specially arranged the students to try some corn flour and special milk powder. Many of them responded that the taste of the special milk powder was unacceptable. They deeply felt what the patients suffers.

Director Zhuang, from National Yang-Ming University Hospital, Department of Pharmacy, mentioned about the approval basis, the policies and the development and rewarding rules of rare diseases currently in Taiwan. And he also introduced about the preservation, selection, side effects and the prohibition of the medicine, which reminding the patients to be more aware of using the medicine.

At last, Mrs. Serena C. Wu, the founder of TFRD, shared her life story to the students. As a parent of a patient, she had turned her personal experience into motivation and continuously speaks for rare disease families. Many students have been inspired by the founder, and they hoped they could pay more attention to the society with their palms down.

Translator: Ellen Kuo (OI), Reviewer: Sandy