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Health Ministry urged to approve drug to help patients with spinal muscular atrophy
The Health Ministry should approve a drug named Spinraza that can help people with spinal muscular atrophy (SMA), said WeCare Journey co-founder Yap Sook Yee. “On December 23, 2016, the…
Global Rare Disease Commission Creates Roadmap to End the Diagnostic Odyssey
The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease has released a roadmap detailing three tracks focused on patient and family empowerment, technology, and genetic consultation. All of which…
Time to pay more attention to the rare diseases
WORLD Rare Disease Day (WRDD) was celebrated last week. An annual commemoration initiated by the European Organisation for Rare Diseases, WRDD was celebrated for the first time on Feb 29,…
Sharing rare disease data across borders
Those who contracted Covid-19 are experiencing what it’s like to have a condition that is difficult to diagnose without clear treatment options. This is the norm for people living with…
Rare Disease Week – Reflections with A Parent of Rare Disease Child
https://youtu.be/nKXX4I6rL5k
Spotlight on LSD’s costly impact
TO UNDERSTAND her subjects, full-time artist Chiang Sook Siang visited the clinic where they were receiving their doses of enzyme replacement therapy every day for a month. That is why…
