Orphan Disorders
Orphan Disorders
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In the Philippines, rare or orphan disorders refer to long standing, life threatening, progressive, disabling conditions that affect less that 1 in 20,000 individuals. Filipino patients born with rare disorders are “orphaned” by society. They suffer from social abandonment because of lack of existing network of support to aid them. In 2016, the Rare Disease Act of the Philippines, a legislation supported by VYLH-Philippines, was signed into law.
WHAT IS A RARE DISEASE?
WHAT IS A RARE DISEASE?
A rare disease, otherwise called an orphan disorder, is any health condition resulting from genetic defects that afflicts no more than 1 of every 20,000 individuals in the country. Rare disorders afflict babies in all socioeconomic levels. Besides the little information available about their nature, what makes dealing with rare disorders even harder is that they are long-standing, progressive, disabling and life threatening.
Filipinos born with rare disorders are “orphaned” by society. They suffer from social abandonment because of lack of existing network of support to aid them. Medical help is elusive under the conditions of the country’s health priority. The nature of their illness is hardly known due to lack of information and only a few medical professionals, particularly in the country, are aware of these disorders and know how to diagnose and address these conditions.
Examples of rare, orphan disorders:
Pompe Disease
Gaucher Disease
Maple Syrup Urine Disease (MSUD)
Fabry Disease
Mucopolysaccharidosis (MPS).
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