GREAT WORK BEING DONE IN THE PHILIPPINES
And it's being done for children with physical and facial differences, by those trying to make a difference--note that a young lady with Moebius Syndrome is being helped:
"...[The group is called] the Philippine Society of Orphan Disorders (PSOD) who toured Manila Ocean Park and Museo Pambata. The special event, dubbed as “Rare Moments”, is another project of Photography with a Difference (PWD). PWD is led by renowned photographer and advocate John Chua who aims to create public awareness about persons with disabilities (PWDs) through beautiful photographs. This event was made possible by Canon Philippines, Canon A-Team, SM Program for Disability Affairs, Manila Ocean Park, and Museo Pambata.
...[PSOD is] a non-government organization that raises public awareness on these rare disorders. The organization assists patients and their families through support groups and by providing access to doctors and researchers in the management of these conditions.
“This is one great worry-free day for the kids and we are grateful to the team that organized this event. This is special for them because it is the first time for most of the kids to be at the Manila Ocean Park and Museo Pambata. Most of our members are from low-income families and they don’t have the resources to go to these places,”explains PSOD president Cynthia Magdaraog.
PSOD has a total of 147 members suffering from different, rare diseases, that include Rett Syndrome, a disorder in the nervous system that affects the expressive language and hand use; Mucopolysaccharidosis (MPS) that causes identical and abnormal physical features to the inflicted and also cause mental retardation; Maple Syrup Urine Disease that prevents the inflicted from consuming protein, which otherwise causes neurological damage.
Another patient, 11-year-old Bea Villalobos was so happy during the event since it was also her first time to set foot on those venues. “I was excited. I really like the fishes,” she says. Bea suffers from Moebius Syndrome, a neurological disorder that is characterized by facial paralysis. Bea was born cross-eyed and clubfooted. She is scheduled for operation on her feet. Like Gwen, she is also wheelchairbound.
What PSOD is ultimately aiming for is to establish a nationwide registry of relevant and material statistical information, medications, drug trials and all other pertinent information about orphan disorders. In a particular disorder, according to National Institute of Health, at least one in every 20,000 is inflicted, but it can also be as rare as one in 40,000, one in 60,000 and so on.
“We’re campaigning for registry because the more patients that we have, the more likely the government will help us. And also for pharmaceutical companies, encourage them to pursue developmental medicine. Worldwide, there is a campaign to increase registry,” Magdaraog says.
Established in 2006, PSOD has been pushing for reforms and understanding from both the society and the government. Medical professionals from the University of the Philippines, National Institute of Health, and Institute of Human Genetics have been consistently supporting the organization and its efforts.
“Most of our patients are referred to us by the Institute of Human Genetics for help. For example the family needs medicine and we direct them to sponsors and doctors who can provide proper care. We also have family support wherein we train parents, especially mothers on proper home care giving skills,” she shares.
She also says that there is a program instituted by the Institute of Human Genetics wherein they orient pediatricians about the symptoms of these rare diseases and how they can be detected.
PSOD wants to create awareness so as parents with children who are inflicted with these rare diseases won’t just abandon their children. In most cases, one of the parents tends to abandon their child or children inflicted with a rare disease. Since most of these diseases are due to genetics, some families have more than one child in the family inflicted with the condition.
“Our thrust now is to talk to the Department of Health and the Department of Social Welfare and Development to include this sector in their self and social welfare agendas. We need a seal of approval that this sector exists and needs to be taken care of. We also have a bill pending in the Senate, the rare disease act,” Magdaraog says.
“Our priority is the children, if they are not treated the right away, they will die or become severely mentally and physically challenged. We believe that everyone has a right to life and the right to live productively,” she ends."


"He who asks a question is a fool for a minute; he who does
not remains a fool forever." -Chinese proverb