Rahayu Mahzam on expanding use of Rare Disease Fund

The Rare Disease Fund (RDF) is a charity fund, in which the Government matches donations three to one. It is managed by the RDF Committee (RDFC), which oversees fundraising efforts and donor engagement. The expansion of the RDF to cover cell, tissue and gene therapy products and the ability to draw on the principal donation to spend on them are fairly recent arrangements, said Senior Parliamentary Secretary for Health Rahayu Mahzam. Replying to a Parliamentary question on Wednesday (Nov 22), she said the RDFC will communicate with new donors on them. She also said the RDF has listed seven treatments for five conditions, based on the clinical effectiveness of the treatments and adequacy of RDF support. Since November 2022, the RDF has received and supported applications from eight patients. Ms Rahayu also said the Ministry of Health will review the clinical and cost effectiveness of spinal muscular atrophy treatments for subsidies and mainstreaming financing.