We strive to raise awareness for XDP by reaching out to communities, especially those in hard-to-reach villages, to debunk the stigmas and myths about the disease. For many generations, the disorder was considered a curse, with many people hiding patients out of fear and shame. Today, the SCF works with its Community Advocates to explain the science behind XDP. We recognize, however, that genetics, as a biomedical concept, is non-existent to some people, so our job is to make them understand what XDP truly is.
Through the help of our volunteers and advocates, we were able to launch the following awareness campaigns and look forward to more:
• Lay forums: Tapping local health workers, we can actively find new cases within the region.
• Youth volunteer initiatives: The youth have been vital in translating medical jargons into simpler terms to help to spread the word on XDP and the SCF.
• Radio, TV and Podcasts: Through media channels, we can reach far-flung areas too difficult to visit, speaking to the audience in the local Hiligaynon dialect. The initiative has been successful, seeing an increase in geneting counseling consultations.
The Sunshine Care Foundation Inc., 2F
The Health Centrum, Teodorica Avenue, Banica, Roxas City, Philippines
The Sunshine Care Foundation Inc.,
Metro Iloilo and Medical Center, Metropolis Avenue, Iloilo City, Philippines