On Thursday, June 11, 2026, Universitas YARSI in collaboration with GenomikA Saius Indonesia and Indonesian Rare Disorders (IRD) organized “Gathering & Scientific Forum YARSI Cares for Rare Diseases with Community” with the theme “From Empathy to Action for IRD” at Universitas YARSI, Jakarta. The activity was opened with remarks from Prof. dr. Fasli Jalal, Ph.D (Rector of Universitas YARSI) and dr. Siti Nadia Tarmizi, M.Epid (Director of P2PTM Ministry of Health RI), demonstrating the institution’s commitment to providing special attention to rare diseases that remain a public health challenge in Indonesia. This scientific forum featured competent speakers in their respective fields, namely dr. Arifanto, Sp.A(K) (Pediatric Neurologist), dr. Yulia Ariani, Sp.A(K) (Pediatric Nutrition and Metabolic Specialist), and dr. Liko Maryudhyanto, Sp.KJ (Psychiatrist), as well as Dr. Christine Yan from Salus Biomed who discussed medical aspects and management of rare diseases. The forum was moderated by Prof. Dr. Tjandra Yoga Aditama, Sp.P(K), MARS., DTCE., FISR (Director of Postgraduate School at YARSI), while Prof. dr. Sultana MH Faradz, PAK, Ph.D (Genetic Counselor at YARSI) provided closing remarks. As a concrete demonstration of commitment to the rare disease patient community, Universitas YARSI also provided free chromosome analysis services for 5 rare disease patients attending the event, demonstrating the institution’s dedication to providing practical support to the community in need. The event was open to the public with free registration fees, ensuring broad accessibility for all parties seeking knowledge and support related to rare diseases.
The “YARSI Cares for Rare Diseases” activity organized by Universitas YARSI aligns with the achievement of Sustainable Development Goals (SDGs) on several important points. Goal 3 on Good Health and Well-being is promoted by raising public awareness and knowledge about rare diseases that are often overlooked, providing access to quality health information from leading medical experts, and offering free health services in the form of chromosome analysis for rare disease patient communities in need, supporting early detection and more optimal management of rare diseases. Goal 4 on Quality Education is advanced by providing education and learning forums on rare diseases to communities, patient families, and health workers, enhancing comprehensive understanding of diagnosis, treatment, and psychosocial support for rare disease patients. Goal 10 on Reduced Inequalities is addressed by providing equal access to health information and medical services for rare disease patient communities who are often marginalized in the general health system, increasing visibility and recognition of rare diseases at community and government levels. Additionally, Goal 17 on Partnerships for the Goals is achieved through strategic collaboration among higher education institutions (Universitas YARSI), rare disease patient community organizations (IRD), genetic research institutions (GenomikA Saius Indonesia), and the ministry of health in building a more inclusive and responsive health ecosystem to the needs of rare disease patients. This activity also demonstrates the role of higher education institutions as social change agents that care about complex public health issues requiring multidisciplinary and collaborative approaches.
