Health experts said a unified national registry for rare diseases in the Philippines will raise more awareness and support for Filipinos diagnosed with rare conditions.
“The policy makers don’t have [data] that points to what we need. They can decide better, they can craft policies better if they get a better landscape of what rare conditions are,” pediatrician and clinical geneticist Maria Melanie Liberty B. Alcausin told BusinessWorld in an interview on Thursday.
“If there’s no registry, there’s no data. Without data, there’s no policy, so the registry is really important; that’s why it’s at the top of our concern,” she added.
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