All delegates gather for a picture during Patient Advocacy Capability Training in Singapore

Yayasan MPS dan Penyakit Langka Indonesia Represented Indonesia in Asian Rare Disease Patient Forum

21 Oct 2019

Our foundation, Yayasan MPS dan Penyakit Langka Indonesia (Indonesian MPS and Rare Diseases Foundation) had the opportunity to join the “Patient Advocacy Capability Training” Workshop held in Novotel Singapore on Stevens Hotel

Neuronal ceroid lipofuscinosis 2: A Monster Attacking The Nervous Systems

03 Oct 2019

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

Jeune Syndrome: Is There Any Hope?

18 Sep 2019

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

What is Pompe Disease?

12 Jun 2019

Pompe disease, or glycogen storage diease type II (GSD type II), acid maltase deficiency, or acid alpha-glucosidase (GAA) deficiency, is a rare disease caused by mutations in the GAA gene

Fund Raising Gala Dinner Rare Disease Day 2019

02 May 2019

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

Funwalk Indonesia Rare Disease Day 2019

02 May 2019

Funwalk on Sunday, February 24th, 2019, at the Car Free Day Jl. Sudirman, Central Jakarta, was held as an opening of the series events to celebrate World Rare Disease Day 2019

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