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Padilla et al. Rare Dis Orphan Drugs J 2023;2:27  https://dx.doi.org/10.20517/rdodj.2023.38  Page 9 of 13

               Community engagement
               The presence of an empowered collaborative stakeholder community has also contributed to the success of
               the PNBSP.  The national NBS system includes engagement with experts, health professionals, staff,
               advocates, academe and civil society, and the religious sector. Engagement with these program partners
               includes activities compliant with Presidential Order No. 540, which declares the first week of October of
               each year as National Newborn Screening Week . With the DOH and the IHG as national focal points,
                                                         [30]
               activities are organized to commemorate this event and ensure that information about the availability and
               benefits of NBS is expeditiously and widely disseminated to the general public. Activity co-sponsors have
               included local government units, NBS coordinators in NSFs, private companies (sponsoring baby and
               family expos), and volunteers for interviews in radio programs.


               The NBS agenda has also been disseminated and strengthened through the initiatives of various advocacy
               organizations such as Volunteer Youth Leaders for Health (VYLH)-Philippines, and the Philippine Society
               for Orphan Disorders (PSOD). VYLH is a network of proactive, service-oriented, empowering, and
                                                                        [31]
               visionary leaders mobilizing the youth towards a healthy Philippines . PSOD is a non-stock and non-profit
               organization established in 2006 to provide patient support for rare diseases . Both groups were
                                                                                       [32]
               instrumental in the lobbying efforts for the enactment of the Rare Disease Act of 2016 or Republic Act No.
               10747 , which supported some of the conditions in the ENBS panel.
                    [33]
               Panels of medical specialty experts assumed the responsibility for formulating algorithms for screening,
               confirmation/diagnosis, and treatment. They also provided canned responses to frequently asked questions
               from both doctors and patients. Separate medical expert panels were created to handle metabolic disorders,
               G6PD deficiency, hemoglobinopathies and thalassemias, congenital hypothyroidism, congenital adrenal
               hyperplasia, and cystic fibrosis.


               Capacity building/cross training
               From the outset, there has been a demand for trained healthcare providers who could assist with short-term
               follow-up. In 2011, the Master of Science in Genetic Counseling program was approved for implementation
               at the University of the Philippines Manila [34,35] . The 2-year program trains genetic counseling professionals
               to be equipped with the competencies necessary to counsel and empower patients and families to make
               informed genetics-related decisions. Some of these trained genetic counselors (GCs) are currently providing
               services to the NSCs, including in-person genetic counseling and telegenetics. In 2022, the GCs organized
               themselves to establish the Philippine Society of Genetic Counselors, Inc., with the commitment to sustain a
               community of highly trained GCs by sharing expertise and best practices relative to education, research, and
                                [36]
               professional practice .

               Quality assurance
               Quality services are critical in the delivery of all NBS services. The Philippine Performance Evaluation and
               Assessment Scheme (PPEAS) is a quality checklist designed to monitor quality and guide improvements in
               the PNBSP. The PPEAS was developed on a similar PEAS developed for US NBS programs. PPEAS aims to
               help ensure and improve NBS quality at regional and local NSFs, as required by Republic Act No. 9288.
               Several evaluation tools were developed for different NBS system components: NSCs, NSFs, and CHDs.
               More recently, PPEAS tools have been developed for the NBSCCs . Each NSC is a participant in the
                                                                          [37]
               Newborn Screening Quality Assurance Program (NSQAP) of the Centers for Disease Control and
               Prevention (CDC), USA and the G6PDD External Quality Assurance Program of Preventive Maintenance
               Foundation in Taiwan. These programs periodically provide unknown samples in a graded external Quality
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