The First Workshop for Rare Disorder Teachers

The First Workshop for Rare Disorder Teachers

Under the promotion of theInclusive Education, regular class teachers had more opportunities to access torare disorder students. However, inevitably the teachers were worried about howto provide efficient assistance in their first contact. In order to letteachers know more about rare disorders, Taiwan Foundation for Rare Disorders(TFRD) started to hold a training workshop for them. 15 teachers from preschoolto junior high had participated in this course.

First of all, Mr. Chiu, a geneticcounselor from Mackay Memorial Hospital, shared the knowledge of raredisorders. He introduced those rare disorders commonly seen schools from 3aspects, the definitions, the genetic chromosomes, and the genetic patterns.Through the pictures, Mr. Chiu had not only vividly conveyed the clinical characterizationand the methods of diagnosis and treatments, but also mentioned about thestories among rare disorder children and their parents, making the incomprehensiblemedical knowledges more interesting.

Secondly, Mr(s). Dai, a teacherfrom Zhongshan elementary school, described the students with rare disorders asthe precious angels. It’s so special that we can meet these angles. It seemslike a kind of serendipity. Mr(s). Dai had shared the efficient ways tocommunicate with parents, the techniques to encourage peers’ assistance, thearrangement for them to move easier in campus, and the adjustments of teachingstrategy, and so on.

Mr(s). Dai was actively committedto creating this kind of ambience in class, which made the peers accept thoserare disorders, and assist them actively. Furthermore, she also let themparticipate in all kinds of courses as moe as possible. In order to build upthe confidence and esteem of students with rare disorders, Mr(s). Dai appealedto all the teachers in this workshop for being aware of the individualized demands,taking the initiative, and reducing the discrimination. She hoped they can allgrow up healthily and happily.

At last, Ms. Hsieh, the Chief ofMedical Service Division in TFRD, thoroughly introduced the available resourcesin the period for schooling, including the propaganda in schools, scholarships,and the first training manual about rare disorders for teachers. Those teachersin the workshop claimed that they had learned the professional knowledge ofrare diseases, and it would do a great help on their practical teaching. Theyhoped that parents could be invited in the future to share more about the raredisorders, and we could realize more about their needs and the difficultiesthey are facing.

Translator: Ellen Kuo (OI), Reviewer: Sandy