About Malaysia Lysosomal Diseases Association

The Malaysian Lysosomal Diseases Association (MLDA) was founded in May 2011 and is run by a group of parents as a not-for-profit organization. The main goal is to represent the interests of LSD patients and their families to strive for equal treatment and rights.

 

MLDA’s greatest challenge is to find a way to ensure that every eligible LSD patients gets the needed lifelong treatment of ERT, despite the exorbitant medical cost. Each individual ERT costs about MYR 1 Million a year. No family is able to cover this cost on their own, nor are the insurance companies in the country is willing to provide the patients with the reimbursement required for the treatment.

   

MLDA dedicates itself to improve the lives of all patients afflicted by LSD. The organization has 10 patients waiting to be treated, and more are likely to be identified in the near future. At MLDA, we believe that every life counts Therefore, the organization strives to advocate and work with policy makers towards better support for LSD patients by educating the public on the existence of LSD and supporting the welfare of the patients. This aim will not be achievable without the awareness of the public.