by Dr. Mirasol S. Ellong and Iris R. Tomas
The Newborn Screening Continuity Clinic (NBSCC) Region IX continues to strengthen its commitment to the health and well-being of newborns and individuals living with Inborn Errors of Metabolism (IEM) and other conditions detected through the Philippine Newborn Screening Program. Through several key initiatives, the clinic has demonstrated its dedication to providing continuous, compassionate, and comprehensive care to its patients and their families.
Empowering IEM Patients through Medical Identification Band Distribution
In November 2022, NBSCC Region IX began distributing medical identification bands to patients diagnosed with Inborn Errors of Metabolism. This initiative represented an important step toward improving patient safety and quality of life.
The medical ID bands serve as visible and vital identifiers, providing healthcare professionals and first responders with critical information during emergencies. This ensures that appropriate and timely care is administered according to each patient’s metabolic needs.
The distribution activity was made possible through collaboration among clinic staff, patient families, and support networks. The positive response from recipients reflected the sense of reassurance and security these ID bands have brought to individuals living with IEM.
Honoring Fortitude: “Determined Spirit” Award Ceremony
On February 14, 2025, the clinic hosted a special award-giving ceremony to recognize its “Determined Spirit” patients—individuals living with IEM who have shown remarkable courage, perseverance, and strength in facing their daily challenges.
The event celebrated not only the patients’ resilience but also the steadfast support of their families and caregivers. It served as a powerful reminder of the value of early diagnosis through newborn screening and the importance of continued care and encouragement throughout the lives of those affected by IEM.
The ceremony fostered a sense of unity and hope within the community, highlighting the shared commitment of patients, families, and healthcare providers to overcoming obstacles together.
Zebra Voices: A Pledge of Hope and Solidarity
To commemorate Rare Disease Day, the clinic launched the “Zebra Voices” Support Wall on February 24, 2025, at the Zamboanga City Medical Center Lobby. This dedicated space stands as a lasting symbol of unity, compassion, and awareness for individuals and families affected by rare diseases, including IEM.
The Zebra Voices wall is more than a display—it is a living testament to the strength and solidarity of the rare disease community. Patients, families, healthcare providers, and community members were invited to contribute stories, artwork, and messages of support. The overwhelming participation and heartfelt expressions of hope showcased the compassion and togetherness that define Region IX.
The wall serves as a beacon of encouragement and understanding, reminding everyone that those affected by rare diseases are not alone. It continues to inspire visitors to advocate for awareness and support for individuals living with these rare conditions.
Sustaining a Holistic Commitment to Care
These initiatives reflect NBSCC Region IX’s holistic approach to patient care, extending beyond early detection through newborn screening to include continuous support, education, and empowerment for patients and their families.
The clinic expresses its deepest gratitude to its dedicated staff, resilient patients, supportive families, and all partners who continue to uphold its mission. Together, they weave a tapestry of hope, compassion, and healing for the rare disease community in the region.
