Similar Posts
He just can’t play like the rest
While other children fully and freely enjoy their childhood, seven-year-old Muhammad Hazril Mikhail Hizar is unable to due to a rare skin disease. The boy suffers from epidermolysis bullosa or…
This Mother Is Fighting For More Funding To Treat Rare Diseases In Budget 2019
The Pakatan Harapan government is now less than a month away from tabling Budget 2019, its maiden Supply Bill The bill will be tabled on 2 November, and debates on…
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…
Perjuangan Adnin, Aqilah
Tiada siapa menyangka di sebalik wajah ceria dan senyum manis dua beradik ini mereka sebenarnya menyembunyikan penyakit kronik yang boleh membawa maut sejak sepuluh tahun lalu. Adnin, 18, dan Aqilah…
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…
Rare disease unable to stop talented painter
Having a rare genetic disease does not stop Nur Fariza Abu Hassan from creating beautiful, almost life-like art that has not gone unnoticed on social media. Her pictures of landscapes,…
