Support for Children Diagnosed with Rare Diseases that Require High-cost or Long-term Treatment

Ms Mariam Jaafar asked the Coordinating Minister for Social Policies and Minister for Health (a) how many children are currently diagnosed with rare diseases requiring high-cost or long-term treatment; (b) to what extent are their treatment costs supported under subsidy schemes including the Rare Disease Fund; and (c) whether the Ministry will consider expanding support for children with rare diseases to cover related costs, such as home-based medical equipment, transport, nutritional needs or caregiving.

The Ministry of Health (MOH) does not specifically track the number of children diagnosed with rare diseases.

All clinically- and cost-effective treatments, including those for rare diseases, are subsidised at our public healthcare institutions. MediSave and MediShield Life coverage is also available to further offset costs for selected high-cost drugs, and cell, tissue and gene therapies targeting rare diseases.

The Rare Disease Fund (RDF) provides additional support to patients with rare diseases who may need help to afford their treatments, including instances where the treatments may not be covered by subsidies, MediSave or MediShield Life. For every dollar donated to the RDF, the Government matches with three additional dollars.

Beyond treatments, some rare disease patients may also encounter disabilities for which additional support is required. Such patients can tap on long-term care subsidies and grants, which will be enhanced progressively from 2026, to offset such caregiving and equipment costs. For instance, those with disabilities can tap on monthly payouts of up to $400 from the Home Caregiving Grant to defray their caregiving costs, so long as they are being cared for in the community. They can also tap on the Assistive Technology Fund to offset the costs of any supportive equipment they might require.

Those who still face financial difficulties can approach the medical social workers at their healthcare institutions to explore other forms of support for their needs, such as MediFund.