International MPS Network Meeting at Rinku Osaka Japan has ended today. From this meeting we can see advance country which have a establish SYSTEM will take full care of their patient benefit. The patients are either protected under Orphan Drug Act(Taiwan, Japan, US) or via law suits against the federal government like in Brazil and some countries in South of America. 

LSD patients need Enzyme Replacement Therapy (ERT) which cost average RM 1 mil per patient per year. MLDA is stuck now as there’re still 13 patients awaiting for ERT. We do not have an Act here, and we do not even have a policy here, we only have a guideline to treat, so a guideline will always remain as a guideline. Budget challenge kill all these patients, it’s real sad to say this but this is the fact. 
What you can do to assist MLDA is to help us get more people to LIKE our page so that our voice could be heard by our Prime Minister.