The Commission on Human Rights (CHR) raises awareness for Filipinos living with rare diseases and affirms their rights as it joined the nation in commemorating the 2025 National Rare Disease Week (NRDW) which is observed during the last week of February.

NRDW in the Philippines was established through Presidential Proclamation No. 1989 issued in 2010 to raise awareness about the challenges faced by Filipinos with rare diseases.

The CHR said that a rare disease affects one in every 20,000 individuals. Some of these rare conditions can be identified through the newborn screening panel. 

Citing data from the Institute of Human Genetics of the University of the Philippine Manila, the CHR said that rare diseases refer to life-threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them.

However, access to proper health care remains a challenge in the country, the CHR said. 

Despite the enactment of Republic Act No. 10747, the Rare Diseases Act of 2016, which seeks to provide medical care and financial support for individuals with rare diseases, the CHR acknowledged that its full implementation still cannot be achieved.

"Many patients and their families continue to face limited access to specialized healthcare, high treatment costs, and a lack of widespread awareness," it said. 

"Individuals living with rare diseases face not only the challenges of their medical conditions but also broader societal barriers such as exclusion, limited access to healthcare, and lack of public awareness. Despite the invisibility of their conditions to many, their struggles are tangible and must be addressed," it added.

Every Filipino deserves the fundamental right to health, including those with rare diseases, the CHR pointed out. 

Thus, it said, it is imperative for everyone to act collectively to ensure that individuals with rare diseases receive the necessary support, protection, and awareness that they rightfully deserve.

"Every individual, regardless of the rarity of their condition, must have equitable access to timely, affordable, and quality healthcare services without discrimination," it also said. 

"CHR, as the country’s independent national human rights institution, remains steadfast in its Constitutional mandate to protect and uphold the rights of all—especially those who are often overlooked," it added.