Cebu Capitol lights up purple to join campaign of rare disease awareness

 
CEBU CITY – The Cebu Provincial Capitol lit up purple at 7:00 p.m. on February 28 to join with the global Light Up for Rare Disease Day campaign held annually on the last day of February. The purple illumination stands as a powerful symbol of unity and solidarity with Filipino families living with rare conditions, many of whom face delayed diagnosis, limited access to treatment, and lack of public awareness.

By taking part in this symbolic lighting and global movement, for the first time in history, Cebu governor Pamela Baricuatro signifies her commitment to strengthen campaign for rare disease awareness and inclusive healthcare to enhance support systems for marginalized sectors, particularly individuals and families affected by rare diseases.

 “Participating in initiatives such as “Light Up for Rare” is crucial in ensuring that patients with rare conditions receive proper recognition, support, and equitable attention similar to other medical conditions,” said Dr. Elisse Nicole Catalan, Capitol Piso Public Health Consultant.

According to Catalan, these conditions are called rare diseases because only a small number of individuals share the same diagnosis, however there is something Capitol can do, early detection is key to preventing the condition from worsening.

Catalan cited some statistics in the Philippines, adding that a disease is classified as rare if it affects no more than one in every 20,000 individuals.  Globally, more than 7,000 rare diseases have been identified, affecting an estimated 300 million people worldwide and approximately 80 percent of these conditions are genetic in origin, while 75 percent affect children.

On average, patients wait up to eight years before receiving an accurate diagnosis. Despite the significant number of people affected, only a small fraction of rare diseases currently has approved treatments.

 “This initiative goes beyond simply lighting the Capitol in purple. Governor Pam wants to actively engage with rare disease groups so the Province can better understand the kind of assistance they need from the Cebu Provincial Government,” Dr. Catalan added.

The country also observes National Rare Disease Week every last week of February pursuant to Presidential Proclamation No. 1989. The Rare Diseases Act of the Philippines, with the Universal Health Care Act and the Newborn Screening Act, provide legal and structural support for early detection, improved access to healthcare services, and recognition of persons with rare diseases as persons with disabilities.

Catalan said that under Governor Baricuatro’s leadership, the Province of Cebu continues to strengthen its healthcare system through expanded services, policy alignment with national mandates, and multi-sectoral collaboration to ensure that no Cebuano is left behind. (Photos: Capitol PIO/Marielle Camacho)