Donations Made To Rare Disease Fund and Alternative Fundraising Arrangements with Matching Donation Support For More Diseases

NOTICE PAPER NO. 1390

NOTICE OF QUESTION FOR ORAL ANSWER

FOR THE SITTING OF PARLIAMENT ON 3 OCTOBER 2022

Name and Constituency of Member of Parliament

Ms Nadia Ahmad Samdin

MP for Ang Mo Kio GRC

Question No. 3487

To ask 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.

Written Answer

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 3:1 matching contributions since inception. This includes $37.9 million raised in FY2021, and $8.6 million raised in FY22 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.