Browsing Tag

Rare Disease Fund

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Desperate parents launch S$2.4 million crowdfunding campaign to save baby Lucas from rare genetic disorder

Lucas, a 2-month old baby diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic disorder that requires Zolgensma treatment priced at S$ 2.4 million, which is not subsidised by the government, nor is SMA treatment covered by the Rare Disease Fund. His parents, unable to afford it, appeal for crowdfunding. SMA progressively weakens muscles, robbing him of basic abilities. They seek the compassionate community’s support to give Lucas a fighting chance at life.

Singapore has about 2,000 to 3,000 patients afflicted with chronic rare diseases

An estimated 2,000 to 3,000 people are afflicted with chronic rare diseases in Singapore and the Rare Disease Fund (RDF) has supported nine patients, which represents about 0.4% of Singaporeans with rare diseases, since its establishment in 2019.

Paul Tambyah: Not appropriate to fund treatment of rare diseases through crowd-funding or charity funds

SINGAPORE — Dr Paul Ananth Tambyah says that it is not appropriate…

MOH maintains the question of whether to support expensive treatments for rare diseases when efficacy is uncertain

SINGAPORE — “There remains the broader question as to whether the Government…