• 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.

    Read More
  • 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.

    Read More
  • 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

    Read More
  • 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.

    Read More
 
03 Oct 2019

Neuronal ceroid lipofuscinosis 2: A Monster Attacking The Nervous Systems

Neuronal ceroid lipofuscinosis 2 (CLN2) or Batten disease is a lysosomal storage disease which primarily affects the nervous system

18 Aug 2017

What is Phenylketonuria?

Phenylketonuria (PKU) is a rare inherited metabolic disease that causes the patient not to be able to metabolize an amino acid called phenylalanine

23 Nov 2017

What is Morquio A Syndrome?

Morquio Syndrome or type IV a mucopolysaccharidosis is a type of lysosomal storage disorder (LSD) which is inherited

© 2017 penyakitlangkaindonesia.org. All rights reserved