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  • 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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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

18 Aug 2017

Isovaleric Acidemia

Patients with isovaleric acidemia (IVA) are unable to break an amino acid called leucine due to deficiency of isovaleryl-CoA dehydrogenase enzymes. Leucine is one of the essential amino acids that must be met from food. The manifestation of leucine buildup occurs very acutely in the first few days of life.

13 May 2017

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

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