CHR commemorates the National Rare Disease Week

THE Commission on Human Rights (CHR) joins 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 1989, s. 2010, to raise awareness about the challenges faced by Filipinos with rare diseases. In the country, a disease is classified as rare if it affects no more than one in every 20,000 individuals. Some of these conditions can be identified through the newborn screening panel.

Additionally, according to the Institute of Human Genetics of the University of the Philippines Manila, 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.

Republic Act 10747 or the Rare Diseases Act of 2016, seeks to provide medical care and financial support for individuals with rare diseases. However, its full implementation remains a challenge. Many patients and their families continue to face limited access to specialized health care, high treatment costs and a lack of widespread awareness.

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 health care, and lack of public awareness. Despite the invisibility of their conditions to many, their struggles are tangible and must be addressed.

The Commission believes that people living with rare diseases have the fundamental right to health, as enshrined in both domestic and international human rights frameworks. This right guarantees that every individual, regardless of the rarity of their condition, must have equitable access to timely, affordable and quality health care services without discrimination.

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 is imperative to work collectively to ensure that individuals with rare diseases receive the necessary support, protection and awareness that they rightfully deserve.