• 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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  • RARE DISEASE DAY 2021: “REACHING EVERYONE EVERYWHERE”

    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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14 May 2017

What are the problems faced by health workers and parents when managing patients with a rare disease?

Problems that occur when managing rare diseases are mainly due to limited number of cases (as already explained by the term

02 May 2019

Fund Raising Gala Dinner Rare Disease Day 2019

Graha Dirgantara Ballroom, East Jakarta, is a place of the closing event celebrating world rare disease day 2019

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.

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