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The Pompe Family

Last Thursday, April 4th 2019 I received a shocking news that my 43 days old nephew is having a rare disease. He has undergone many operations due to birth complications…

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Malaysia Rare Disease communities, especially the children’s, has been embroiled with many day to day challenges for a long time. This website highlights the challenges faced by them, recommended solutions, tribute to Malaysia Rare Disease warriors / heroes, recognition to Malaysia Rare Disease champions, as well collection of media coverage on Malaysia Rare Disease. Ultimately, we desire to bring together NGO’s, government officials, medical professionals, corporates, policy makers, and citizens of Malaysia as one entity to help Malaysia Rare Disease communities, especially the children’s, in best interest of their future so they too could lead near normal life like any other child in Malaysia.

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