• 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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  • Virtual Festival Initiated by Medical Students from All Over Indonesia to Raise Rare Disease Awareness

    Recently, Yayasan MPS & Penyakit Langka Indonesia took a part in an event initiated by medical students from all over Indonesia under the Asian Medical Students’ Association (AMSA) Indonesia

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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".

18 Aug 2017

What is Tyrosinemia?

Tyrosinemia is a genetic disorder characterized by disruptions in the multistep process that breaks down the amino acid tyrosine, a building block of most proteins.

All delegates gather for a picture during Patient Advocacy Capability Training in Singapore
21 Oct 2019

Yayasan MPS dan Penyakit Langka Indonesia Represented Indonesia in Asian Rare Disease Patient Forum

Our foundation, Yayasan MPS dan Penyakit Langka Indonesia (Indonesian MPS and Rare Diseases Foundation) had the opportunity to join the “Patient Advocacy Capability Training” Workshop held in Novotel Singapore on Stevens Hotel

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