About Us

Yayasan MPS dan Penyakit Langka Indonesia

Background

In Indonesia, a rare disease is defined as a disease that affects less than 2,000 people in the country. There are still many rare diseases are not diagnosed or without a cure, it causes a rare disease patients and their families facing the problems that reduce the quality and life expectancy of patients and their families

About The Foundation

Yayasan MPS dan Penyakit Langka Indonesia is a non-profit organization that was established in March 2016. The foundation was formed after the convening of "Indonesia Rare Disease Day" for the first time on 29 February 2016. The foundation was established as a first step to embrace the patient, government and stakeholders from inside and outside the country for better governance in Indonesia

The foundation's name comes from one of the rare disease, MPS or mucopolysaccharidosis, but this foundation membership is open to all rare disease patients and their families. Some of the rare diseases that have joined this foundation include maple syrup urine disease (MSUD), deficiency 6-Pyruvoyl-Tetrahydropterin Synthase (PTPS), deficiency of tyrosine hydroxylase, Gaucher Syndrome, Wilson Syndrome, isovaleric academia, glycogen storage disease, phenylketonuria, and there are many more that cannot be mentioned one by one

Vision And Mision

The foundation aims to find a patient or a family with a rare disease in Indonesia, providing network support and help for them and also to raise awareness for public and the government to pay more attention to the needs of the treatment of rare disease patients in Indonesia. With good cooperation between patients, families, communities and the government, we hope the governance patients with rare diseases will get better so that the life expectancy and quality of life of this patient will be more secure

Our Teams

Tim Yayasan MPS dan Penyakit Langka Indonesia bekerja sama dengan pasien, keluarga pasien, dan instasi pemerintah maupun swasta yang terkait berusaha untuk mewujudkan dan meningkatkan kesehatan maupun kualitas hidup yang bagi pasien penderita penyakit langka serta memastikan bahwa setiap pasien penderita penyakit langka memiliki akses yang terbaik dan adil terhadap layanan kesehatan yang terdapat di Indonesia

Our Doctors

Peni Utami SE, MM


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Contact Us


 

Address

Graha Dirgantara Building, Unit F. Lot D, GF Floor

Jl. Protokol Halim Perdana kusuma No. 8, Jakarta 13610

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