Malaysian Rare Disorders Society (MRDS)

We represent and look out for the welfare of individuals including their families that are affected by rare disorders.


Rare Disease Types
of rare diseases are genetic

Individually Rare,
Collectively Many

MRDS is a voluntary organization set up to represent and look out for the welfare of individuals including their families that are affected by rare disorders.


We are at least 1 in 4000 births

Rare disorders including those of genetic origin can be life threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them.

As a guide, low prevalence is taken as a prevalence of less than 1 per 4000 in the community.

Dato Hatijah Binti Ayob


Rare Disease (RD) awareness throughout Malaysia has been very much the effort of MRDS since its inception in 2004.  Thanks to the dedication of Prof MK Thong, Head Department of Paediatrics, and Ms Julianna Lee, Genetics Counsellor of PPUM, Ms Chew Anna, a parent of RD child, MRDS was registered in 2007.

We also wish to give credit to Ms NF Chin, a volunteer with an organization - P.S. the Children. She wrote  our book “Rare Journey of Love” that was published in 2011 with donations received from the Bursa Charity Run. We wish to record our appreciation also to the Management of PPUM for their support in our early years, for the use of the venues and facilities for our activities.

Lastly, we would appeal to all parents to work and to support one another, irrespective of one’s condition, to continue with the Rare Journey of Love, towards achieving equitable accessibility to affordable treatment  for all RD conditions.

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Prof Thong Meow Keong


It is our heartfelt mission to continue to support each other and move together as one, to advocate for new ideas and to follow the evidence in bringing new medical therapies and hope for the future.

“We are guilty of many errors and many faults, But our worst crime is abandoning the children, Neglecting the fountain of life. Many of the things we need can wait. The child cannot. Right now is the time his bones are being formed, His blood is being made, And his senses are being developed. To him we cannot answer ‘Tomorrow.’ His name Is Today”

Gabriela Mistral (1889-1957), Nobel Prize laureate for literature 1945

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Nadiah Hanim Abdul Latif


Welcome to The Malaysian Rare Disorders Society website. Whether you are seeking information on rare diseases or finding ways to connect, we are honored to have you with us.

According to the World Health Organisation (WHO), there is an estimated of 7,000+ rare diseases in the world. Rare diseases do not discriminate, unfortunately misinformation and stigma do.

At MRDS, we aspire for a future where all individuals living with rare diseases and their families in Malaysia can experience a better quality of life through full recognition, equitable opportunity and access to support, including and not limited to health and social care. 

The quest and journey is far from over and we are always on the lookout for positive ways to collaborate for impact. We look forward to assisting and working with you too.

A condition may be rare; but hope and compassion do not have to be.

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