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4worldlovers: 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.

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.

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.

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”

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.

4worldlovers: Booked your admission date? We encourage parents to pre-register with us as early as possible to ensure a smooth and hassle-free admission process.

All admission can be done through our patient Clinic and Accident & Emergency Department.

We understand the first few weeks at home may be challenging, that is why we will ensure you are equipped with the confidence and skills to take care of your little one.

Our patient service officers are be able to run through your cost estimates and bills before, during your stay or at discharge with you.

All nurse are professional, kindly, lovely. I have finished my confinement there. All the food are so nice really appreciate all the nurse taking care...

Experienced nurses and Dr Roopi is very experienced. They took good care of mum and baby as well.

I knew this centre since my teenagehood more than 25 yrs ago. Till today i still go there for gynaecological issues. In the last few years, i have bee...