• 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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    This year, COVID-19 pandemic has brought a big burden around the world. Despite these challenges, Yayasan MPS dan Penyakit Langka Indonesia, in collaboration with National Center for Rare Disease Cipto Mangunkusumo Hospital

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18 Sep 2019

Jeune Syndrome: Is There Any Hope?

Jeune syndrome or asphyxiating thoracic dysplasia is a disease which affects the cartilage and bones.

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.

01 Oct 2020

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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