Phua Wee Seng

SG- Phua Wee Seng.jpg

Singapore

Phua Wee Seng

Phua Wee Seng is a passionate advocate for rare disease patients and their families. He currently serves as the Executive Director and Chief Rare Advocate of the Rare Disorders Society (RDSS), Singapore, where he leads efforts to improve healthcare access and social inclusion for individuals living with rare diseases. Through his leadership, RDSS has grown into a pivotal organization, raising awareness and providing resources for rare disease patients. One of its hallmark initiatives is the annual Carry Hope campaign, which has successfully raised funds and amplified public understanding of the challenges faced by the rare disease community. Wee Seng’s journey as an advocate began when his second child was diagnosed with X-linked Adrenoleukodystrophy, a rare and life-threatening genetic disorder. Faced with the challenge of navigating a complex and fragmented healthcare system, Wee Seng tirelessly sought alternative diagnoses and the best possible treatment for his son. His commitment went beyond advocacy—he even donated his own stem cells in a life-saving procedure. This deeply personal experience ignited his determination to support other families facing similar struggles. Wee Seng views rare diseases as a global health challenge and is eager to collaborate with other EI Fellows to exchange insights and drive systemic change for marginalized health groups.