Indonesia Rare Disease Day 2016

The First Indonesia Rare Disease Day was held on the 29th of February 2016. The theme of this event was “Voicing the Patient’s Rights in Obtaining Ease in Diagnosis and Disease Management”. This theme had been chosen to increase the public’s, health workers’ and policy makers’ awareness about rare diseases.

The 2016 Indonesia Rare Disease Day event was a half-day seminar which was held at the Double Tree by Hilton Hotel Jakarta. Rare disease patient’s care givers representatives were Peni Utami, Hocky Ranti, and Daru Marhaend. They voiced out patient’s struggles in obtaining a definitive diagnosis and management.

Representatives from Taiwan Foundation for Rare Disorders (TFRD) and Malaysia Lysosomal Disorder Association also participated in sharing the role of healthcare associations for rare disease patients in their countries. The final session of this event was a panel discussion led by the Director of Medical director of RSUPN Dr. Cipto Mangunkusumo accompanied by head of organizing committee, Dr. dr. Damayanti Rusli Sjarif, Sp.A(K) with a number of key representative speakers from the Ministry of Health, Ministry of Finance, Commission IX House of Representatives, Badan Penyelenggara Jaminan Sosial (Social health insurance), Faculty of Medicine Universitas Indonesia, Food and Drug Administration, and Health Department of DKI Jakarta.

The main issue in this event was the imposition of custom tax for imported orphan food and orphan drugs as these products were considered as luxury items (due to its high cost). The event was closed by the signing of the commitment of policy makers to aid the management of rare disease patients in Indonesia.

This even became the forerunner to the establishment of Yayasan MPS dan Penyakit Langka Indonesia. After this event, a number of patient’s caregivers have succeeded in getting tax exemption for the orphan foods and orphan drugs that have been imported for them.

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