Orphan diseases in Krusada
MANILA, Philippines - Only one of 20,000 people is afflicted by rare or “orphan diseases” such as Gaucher disease, Cornelia de Lange syndrome and osteogenesis imperfecta. Because of their low incidence and unfamiliarity, they receive insufficient support and attention from the government.
In Krusada tonight at 9:15, Karen Davila will introduce us to two kids who suffer from these unusual and aggressive disorders to seek support from public and private sectors.
Meet 13-year-old Raprap who is diagnosed with osteogenesis imperfecta and doesn’t play and go to school. He shouldn’t be nudged because his fractured and sensitive bones fracture easily.
As a mother and a Youth Ambassador who was awarded by UNICEF for her campaign for children’s rights, Karen continues her campaign for children’s health and wellbeing by bringing these diseases to light.
“It’s difficult to be a parent of a child who suffers from a very serious illness. If we don’t understand them, who will?” she said.
Krusada airs after Bandila on ABS-CBN or watch it earlier on DZMM TeleRadyo (SkyCable Channel 26).
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