FK-KMK UGM. Rare diseases became one of the topics raised in Summer Course 2023, precisely in Panel 2 which was held on Tuesday (7/11) at the Auditorium of FK-KMK UGM. This topic became the focus of discussion because it requires the important role of precision medicine to handle it.
Prof. dr. Damayanti Rusli Sjarif, Sp.A(K), Ph.D. from the University of Indonesia gave the latest overview of rare diseases in Indonesia. In her presentation entitled “Management of Rare Diseases in Indonesia”, Prof. Damayanti explained what rare diseases in Indonesia are and how they have been handled so far.
Furthermore, Prof. Dr. Med. dr. Retno Danarti, Sp.KK(K). from Gadjah Mada University was also present to provide a further overview of rare diseases in Indonesia, especially in the dermatological field. Some examples of rare diseases in the dermatological field include argyria, erythropoietic protorphyria, harlequin ichthyosis, elastoderma, and interstitial granulomatous dermatitis.
In addition to the dermatological field, rare diseases are also found in children. One of them is DMD (Duchenne Muscular Dystrophy). This disease is a genetic disorder that causes the weakening of skeletal muscle and heart muscle function in the body and can deteriorate rapidly over time.
The last speaker in Panel 2 was A/Prof. Teguh Haryo Sasongko, M.D., Ph.D. from International Medical University, Malaysia presenting the material entitled “Evidence Synthesis and Precision Medicine in Tackling Rare Diseases: Insights from Malaysia”. A/Prof. Teguh said that the development of precision medicine in Malaysia did not just run smoothly. There are several challenges they face, including misperceptions about rare disease patients, expensive treatment, and public stigma.
The challenges of treating rare diseases in Malaysia and Indonesia are generally similar. A/Prof. Teguh’s presentation is expected to provide new insights for students participating in the 2023 Summer Course.
Summer Course 2023 was held for 2 weeks from November 6, 2023 to November 17, 2023. This activity, which involves students from both within the country and abroad, aims to improve interprofessional in healthcare management and technology with its accompanying problems with an interdisciplinary and multi-university approach. (Reporter: Nirwana)
