Rare Disease Fund

Baby Lucas successfully receives treatment on Wednesday, thanks to overwhelming S$2.4 Million public support

On Wednesday (2 Aug), baby Lucas, diagnosed with rare genetic disorder Spinal Muscular Atrophy (SMA), triumphantly underwent a life-changing Zolgensma treatment.

In July, his parents urgently sought S$2.4 million through public assistance as the treatment isn’t government-subsidized.

The crowdfunding’s success left them profoundly grateful, overwhelmed by public support and appreciation.

Navigating the high seas of rare disease rreatment in Singapore: A deep dive into Sherry Toh’s experience and the current health policies

Singapore’s healthcare system grapples with the high cost of treating rare diseases. Patient advocate Sherry Toh, battling Spinal Muscular Atrophy, highlights the dichotomy between life-altering treatments and their exorbitant prices.

Critics, like Dr Paul Ananth Tambyah, argue that the Rare Disease Fund’s selective coverage is insufficient, calling for reforms, including aggressive price negotiations and possible local production of expensive drugs.