What is a Rare Disorder?
In the Philippines, A RARE DISEASE, otherwise called an ORPHAN DISORDER is defined as ANY HEALTH CONDITION RESULTING FROM GENETIC EFFECTS THAT AFFLICT NO MORE THAN 1 OF EVERY 20,000 INDIVIDUALS. Examples are Gaucher Disease, Maple Syrup Urine Disease, Pompe Disease, Galactosemia, Phynelketonuria, Methylmalonic Acidemia, Urea Cycle Defects, Hurler Syndrome, Hunter Syndrome, Prader-Willi Syndrome, and the so-called Lubag, which is found only in the island of Panay.
In the Philippines, it is estimated that less than 1,000 individuals suffer from a rare disease. Many of these cases are due to genetic defects, with many patients exhibiting the symptoms during early childhood. Unfortunately, there is minimal interest among research institutions in learning more about these diseases because they affect only a small segment of the population. Moreover, drugs and healthcare products for these disorders have been called orphan drugs or orphan products because of minimal attention paid by pharmaceutical companies to them due to the high cost of production resulting from the absence of commercially significant demand. Thus, patients die during infancy or, if they manage to survive, suffer from chronic, debilitating illnesses that greatly diminish their quality of life, not to mention impose severe strain on their families.
What is PSOD, Inc.?
The Philippine Society for Orphan Disorders, Inc. serves as a central network for the advocacy and effective coordination of all viable efforts to sustain a better quality of life for the individuals with orphan or rare disorders in the Philippines.
EVERYONE HAS THE RIGHT TO QUALITY LIFE!
PS: Learn more about rare disorders in the Philippines. Click the link below: http://www.youtube.com/user/psod2006
Another member patient:
Six years old Troy can no longer see (he is already blind) and almost all of his body no longer function (Vegetative state). Our story is documented on GMA 7's EMERGENCY by Arnold Clavio last Oct. 17, 2008 and it can also be watched at YOUTUBE just visit the site and type in "BATANG BIHAG NG SAKIT" it is a 7 minute clip video.
