Second Rare Disease Asia Conference

Small important steps taken by Yayasan MPS dan Penyakit Langka Indonesia in helping rare disease patients brought us to the Second Rare Disease Asia Conference. This event was conducted at the Pullman Bangsar Hotel in Kuala Lumpur, Malaysia from the 17th-19th of November 2016.

The theme of this event was “Working in One Voice”. This event included all a variety of parties who play a significant role in rare disease patient management. The parties comprised of patient’s families, health workers and policy makers. Representatives from Indonesia included four members of patient’s families, a team of doctors from RSUPN dr. Cipto Mangunkusumo and several members from the Ministry of Indonesian Health Department.

The first day of the conference started of with a keynote speech entitled “Making Rare Duseases an Asian Health Priority” by Prof. Tarun Weeramathri, a representative of the West Australian government. The next session was a panel discussion with the representatives of patient organizations in South East Asia. Dr. Damayanti R. Sjarif, SpA(K), PhD from RSUPN Dr. Cipto Mangunkusumo, Jakarta acted as one of the panelist in the Medical Panel – Definition & Challenges in Rare Disease Management session. In this session, challenges in managing rare disease patients in Indonesia and the efforts that have been made were discussed in detail.

The second day of the conference was group work discussion. There were 3 main groups, namely patient’s families and caregivers, health workers and policy makers. The patient family caregivers and policy makers group explored steps for rare disease patients advocacy through rare disease organizations. The health worker group discussed on the importance of owning a registry for rare disease patients and the steps that should be taken in order to make this happen. In the afternoon session, Dr. Damayanti acted as the moderator for the topic Physicians & Health Officials: Strategic Framework for Rare Diseases. This session discussed the challenges faced by the Asian countries and the steps they have taken to solve their issues. The last day of conference was filled with closing remarks and conclusions from various panelists.

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