• What is a rare disease?

    Rare diseases are life threatening or chronically debilitating diseases with a low prevalence (less than 2000 people in a population) and a high level of complexity. Rare diseases are often seen as unimportant especially in developing countries due to small number of patients, but collectively these diseases are quite common.

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  • 1st ASEAN Rare Disease Network Meeting

    This meeting aims to connect leaders who work tirelessly for the Rare Disease community in their home country and Being a devoted and leading patient advocate in the region, This meeting allowing us to exchange and network, share experiences and coordinate views for the region.

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  • Grand Launching Indonesian Medical Education and Research Institute Fakultas Kedokteran Universitas Indonesia

    Obtaining definitive diagnoses of rare diseases is still a constraint in Indonesia because of the limited experts who are interested in rare diseases as well as limited facilities. On Wednesday, the 12th of April 2017, Yayasan MPS dan Penyakit Langka Indonesia

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  • Official Opening of Indonesia Center of Excellence for Rare Diseases

    Rare diseases are often forgotten and considered less important because there are small numbers of patients and also these disease often need many resources to treat.

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18 Aug 2017

Maple Syrup Urine Disease

A rare inherited metabolic disease that causes abnormalities in the metabolism of certain amino acids, such as leucine, isoleucine and valine. This disease is due to deficiency of chain-branched chain enzyme alpha-keto acid dehydrogenase complex (BCKDC). The name of the disease marks the sweet-smelling urine of patients like "maple syrup".

14 May 2017

What types of rare diseases that have been diagnosed and managed in Indonesia?

Type I, II, III, IVA,VI,VIII Mucopolysaccharidosis, Classic phenylketonuria, 6-Pyruvil Tetrahydropterinsynthase deficiency

23 Nov 2017

What is Morquio A Syndrome?

Morquio Syndrome or type IV a mucopolysaccharidosis is a type of lysosomal storage disorder (LSD) which is inherited

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