Donations Made to Rare Disease Fund and Alternative Fundraising Arrangements with Matching Donation Support for More Diseases
Ministry of HealthSpeakers
Summary
This question concerns the donations received by the Rare Disease Fund (RDF) and potential alternative fundraising structures for rare diseases not currently covered by the fund. Ms Nadia Ahmad Samdin inquired about donation totals for 2021 and 2022 and whether crowdfunding efforts by parents could be integrated into a government-matched donation framework. Minister for Health Ong Ye Kung stated that the RDF raised $37.9 million in FY2021 and $8.6 million as of July 2022, totaling $137.9 million since its 2019 inception. He clarified that earmarked donations for specific individuals are not accepted to maintain fairness, with the RDF Committee assessing patient support based on medical conditions and treatment effectiveness. To encourage public support, the government provides a three-for-one matching contribution and a 2.5 times tax deduction for all donations made to the fund.
Transcript
88 Ms Nadia Ahmad Samdin asked the Minister for Health (a) what is the sum of donations received by the Rare Disease Fund (RDF) in 2021 and thus far in 2022; and (b) given that parents of children with rare diseases not presently covered by the RDF are resorting to online crowdfunding to raise funds, whether there can be consideration for plans to structure an alternative fundraising arrangement that will allow for a different ratio matching donation support for the funds that these parents are able to raise by themselves.
Mr Ong Ye Kung: The Rare Disease Fund (RDF) was established in 2019 to provide financial support to Singapore Citizens with rare genetic diseases who require high-cost treatments on a lifelong basis. As of 31 July 2022, the RDF has raised about $137.9 million from both public donations and the Government's three for one matching contributions since inception. This includes $37.9 million raised in FY2021 and $8.6 million raised in FY2022 as of 31 July 2022.
However, RDF does not accept donations that are earmarked for specific individuals. This is to be fair to all patients. The RDF Committee in turn has the difficult task to decide on which patient to support, after assessing their medical conditions, the effectiveness and cost of the treatment, and funds available.
As patients with rare diseases often require high-cost medicines on a lifelong basis. Let me take this opportunity to encourage Members and the public to support the RDF with their donations so that we can cover more conditions. Donations attract three for one Government matching and enjoy tax deduction of 2.5 times the donation amount.