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Spinal muscular atrophy – making hope real for the families
Spinal muscular atrophy (SMA) is a degenerative disease that occurs in about 1 in 11,000 live births which means about one baby is born with SMA almost every week in…
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…
Rare Disease Week – Reflections with A Parent of Rare Disease Child
https://youtu.be/nKXX4I6rL5k
Insurance coverage for rare diseases
THE Malaysian Alliance of Rare Diseases Foundation takes note of the government’s effort to provide better healthcare coverage for the B40 group through a social health insurance scheme. Although the…
Parents are pillars of strength for these rare disease patients
Azhar Talib and Norliza Mohd Din were delighted when their fourth child was born in 2000. Nur Lydia Afrina was a picture of contentment as she slept most of the…