Redefining ‘rare’
A disease is considered rare in the Philippines if it affects one in every 20,000 Filipinos.
There are between 5,000 and 8,000 rare diseases, the World Health Organization states. While most of these are with a genetic basis, there are also cases when a rare disease randomly occurs in a person who is the first in the family to be diagnosed.
Unfortunately, the exact causes of rare diseases remain unknown. This is partly why many cases go undiagnosed. A disease is considered rare in the Philippines if it affects one in every 20,000 Filipinos. Some of the identified rare diseases in the country include lysosomal storage diseases, maple syrup urine disease and Rett syndrome which is sometimes misdiagnosed as autism or Down’s syndrome, according to an article published on scidev.net. Meanwhile, data from rarediseaseday.org states that there are over 300 million people worldwide living with a rare disease. In these times, equitable access to diagnosis, treatment, care of rare diseases and social opportunity is needed more than ever. Celebrated every last day of February, Rare Disease Day aims to raise awareness among the general public and decision-makers on rare diseases and their impact on patients. The campaign also aims to convince policy makers and authorities to provide universal health coverage that addresses the needs of those living with a rare disease, a move which the United Nations Office of the High Commissioner for Human Rights also stressed. Rare Disease Day was first held in 2008 in 18 countries. By 2019, it was observed by over 100 countries around the world. Rare Disease Day is organized by EURORDIS-Rare Diseases Europe and 60 national alliances of rare disease patient organization partners.