The Malaysian government is keen to use a trust fund model to fund rare diseases treatments, however, there are questions of sustainability and governance regarding this trust fund. In the IDEAS Policy Paper on “The Next Steps for Rare diseases in Malaysia: Improving access to treatment”, we unpack this discussion and identify factors that need to be considered if a trust fund model is pursued.

In the second portion of the paper, we draw lessons from two existing regional collaboration platforms aimed at improving access to high-cost treatment in Europe and encourage the government to embark on regional collaboration efforts to improve access to treatments for patients with rare diseases.