BY: VALERIE ANN DISMAYA
It’s not just colds or flu that we should be concerned about.
Some Filipinos suffer from rare diseases, conditions that are extremely uncommon.
Usually, only 1 in every 20,000 people is affected.
Some well-known rare diseases include Gaucher’s disease, progeria, Hunter syndrome, and maple syrup urine disease.
But how does a person develop a rare disease?
Most of these illnesses are genetic or inherited.
Some occur due to gene mutations that cause abnormal development of certain organs in the body.
Rare diseases can also be acquired from environmental factors, medications, or infections.
To raise public awareness about these rare conditions…
Former President Gloria Macapagal-Arroyo signed Presidential Proclamation 1989, declaring National Rare Disease Week.
The goal of this observance is to strengthen support and research for rare diseases and assist families affected by them.
Many of these diseases still have no definite cure, and the available treatments are often expensive and hard to obtain.
Some patients with rare diseases struggle to access proper medical care due to a lack of awareness about their condition.
Because of this, the Philippine Council for Health Research and Development is conducting studies to find more affordable ways to diagnose and treat rare diseases.
There are also activities such as awareness campaigns, fundraising events, and medical missions to help patients.
