This page dedicated as a tribute to our warriors and living heroes of rare disease in Malaysia.

Our warriors may have left us but they leave behind a legacy and valuable life lesson for all of us.

Our living hero’s serves a reminder to all of us on, no matter fragile a life can be, it’s the positivity and fighting spirit within us that keeps us moving.


Nurul Afrina Balqis
Morquio Syndrome Type IV A

Morquio Syndrome Type IV

Muhammad Hazim Imran
Hunter Syndrome MPS Type III

Chong Jia Jian
Muccopolysaccharidosis Type 1

Spinal Muscular Atrophy

SMA patients
Spinal Muscular

Pesakit ichtyosis
Ichtyosis Disease


Caitlyn Ooi Xuen En
(22nd September 2016 – 20th September 2018)
Infantile Pompe

Nor Aryan Mikail
31st January 2017 – 27th June 2018
Infantile Pompe

Nurul Nasrin
6th January 2007 – 4th September 2018
Morquio Syndrome

MPS Type II disease (Hunter Syndrome)