• 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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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.

Dr. Damayanti menjelaskan alur kerja dan pencapaian Human Genetic Research Cluster IMERI FKUI kepada Bapak Wakil Presiden, Jusuf Kalla, dan para tamu lainnya dalam peresmian Gedung IMERI FKUI
17 May 2017

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

14 May 2017

How to diagnose rare diseases?

Parents of children with rare diseases frequently complain about these things. Diagnosing rare disease is still

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