EDUVARIOME: Educating People Towards a Healthier Nation

EduVariome is a knowledge-sharing program with the community that utilises forum as a medium to raise an awareness of and provide early exposure to high school students about the importance of premarital genetic screening for thalassemia disease.

MyHVP has succesfully obtained a grant with the amount of RM49,829.00 from the Ministry of Higher Education Malaysia to organise EduVariome Program. Between September and December 2022, we successfully organized two EduVariome programs at Sek. Men. Keb. Chetok, Pasir Mas and Sek. Men. Long Yunus, Bachok, Kelantan. A total of 280 fourth-year students from these two districts were selected for the program. The following is the list of schools involved:

Pasir Mas:

SMK Chetok (host)

SMK Kangkong

SMK Tengku Panglima Raja

SMK To’Uban

SMK Sultan Ibrahim 1

Bachok:

SMK Long Yunus (Host)

SMK Sri Nipah

SMK Badak

SMK Dato’ Perdana

SMK Bachok

The implementation of this program was driven by the increasing rate of thalassemia cases among the Malaysian population each year, with a high awareness rate of thalassemia, which is 1:20 Malaysians. This situation requires the cooperation of all parties to reduce thalassemia cases in the future generations.

The program started with the administration of a preprogram survey questionnaire to the students to test their understanding of thalassemia. This was followed by a forum that was moderated by Dr. Nik Norliza Nik Hassan and three panels. The interaction session with the students then started with a quiz, and students who successfully answered the questions were each presented with a token of appreciation. Before the program ended, a post-program survey questionnaires were administered to the students to measure whether the expected improved understanding of thalassemia took place in the participants in the program.

| Continued from page 1, treatment, a thalassaemia patient faces many complications which might cause mortality. Patients include children with severe thalassaemia who are prone to significant physical, psychological and social distress. This is because thalassaemia is characterized by decreased haemoglobin production, either affecting the alpha or beta chain. At a certain level, thalassaemia will lead to severe anaemia that requires blood transfusion to sustain life.

This programme is aimed at encouraging collaboration amongst students, scientists, clinicians and researchers in related fields of human genetics in the LMIC thereby pooling and enhancing skills and knowledge in innovative science that could lead to new discoveries. In short, collaborate to embrace the new. These activities can be implemented via collaborative expertise such as online teaching with graduate students from selected LMIC, seminars and workshops on genetics lab, visiting professorships and institutional development. Other activities such as advocacy will also be included in this program via EduVariome programme with the aim of creating awareness on the burden of genetic disease including thalassaemia.

In conjunction with the award of UNECO Chair, an inaugural lecture will be delivered on 6th February by Prof. Zilfalil Alwi. This lecture aims to introduce to the public the UNESCO Chair and highlight its contribution to the nation and the world.