Caution for rare disease patients
PEOPLE living with rare diseases face many difficulties in getting the diagnosis and care they need. These difficulties are now exacerbated by the Covid-19 pandemic. Many people with rare diseases…
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…
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…
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