June 28 is INSD!
The world celebrates International Neonatal Screening Day (INSD) on 28 June every year.
#INSD is an opportunity to come together and raise awareness of the pivotal role neonatal/newborn screening (NBS) must play in the early diagnosis of childhood non-communicable diseases (NCDs). Please feel welcome to use the slide deck posted below on your socials to help raise awareness about NBS and contribute to collective efforts towards its equitable expansion globally. Other materials available to support your NBS efforts:
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Reflections on #INSD 2026
.June 28th is International Neonatal Screening Day (INSD - neonatalscreeningday.org). INSD is an annual opportunity to celebrate the lifesaving impact of newborn screening, while simultaneously shedding light on the urgent need to expand access to it worldwide.
This year’s observation seems incredibly timely, with just mere days ago (June 23rd), the World Health Organization (WHO) releasing a new framework and call to action on the urgent need to grow and implement newborn screening programs globally. WHO emphasized the sheer number of needless and preventable deaths in low and middle-income countries (LMICS) due to delayed diagnosis and treatment.
Comprehensive Newborn Screening (NBS) Programs include a series of routine medical examinations and tests in the first days of life, allowing many life-threatening, congenital conditions to be diagnosed before symptoms appear. Early diagnosis allows for prompt treatment, reducing mortality, preventing disability, and ultimately improving health outcomes.
Since the 1960s, many countries have implemented national programs that have been screening newborn babies for a range of conditions. Examples of conditions routinely included in national NBS Programs include: congenital hypothyroidism (CH), phenylketonuria (PKU), glucose-6-phosphate dehydrogenase (G6PD), congenital adrenal hyperplasia (CAH), sickle cell disease (SCD), congenital heart disease (CHD), hearing and vision impairments. In recent years, it has become increasingly common for many more additional conditions to be added to national screening programs in higher-income countries (such as cystic fibrosis, severe combined immunodeficiencies spinal muscular atrophy), as more advanced therapies become available.
By contrast, NBS Programs are almost universally absent in low and middle income countries (LMICs). Newborn babies are not screened for conditions that are very easily and affordably treated, and experience profound disability and premature mortality as a result.
The aforementioned World Health Organization (WHO) framework and statement released on 23 June 2026 highlight the importance of urgently scaling universal access to neonatal screening. WHO explains that as infectious disease management improves in LMICS, a greater proportion of deaths for children under five years in LMICS are now due to birth defects (WHO Department of Communications, 2026). WHO explains how essential it is to ensure access to NBS is scaled in LMICs, acknowledging that in 2006, 90% percent of children born with serious birth defects were born in LMICS, and most deaths due to serious birth defects also occurred in LMICs (WHO Department of Communications, 2026).
On a positive note, WHO also shared some of the success stories emerging from nations across Africa, the Americas, and Asia, with increasing numbers of countries now implementing NBS programs. For example, the Philippines took a 24 hospital pilot program, and expanded it across 7000 hospitals that screen newborns for 29 different conditions. Sri Lanka now screens nearly 80% of newborns for CH. In India, 28 million newborns have been screened over three years, resulting in 900,000 thousand babies being diagnosed with conditions amenable to early treatment. Uganda has launched a program for identifying Sickle Cell disease in high burden areas (WHO Department of Communications, 2026) and Indonesia is now screening newborns for CH, CAH and G6PD. These success stories demonstrate that change is possible.
INDS is an international advocacy initiative, and the result of the joint and tireless work of some incredible partners: International Society for Neonatal Screening (ISNS), International Patient Organization for Primary Immunodeficiencies (IPOPI), European Society for Immunodeficies (ESID) collaborate through the Screen4Rare initiative, which aims to raise awareness for Neonatal Screening.
Simply put, neonatal screening doesn’t just save lives - it transforms lives. NBS gives #EVERYchild the opportunity to survive and thrive. An early diagnosis should not be a luxury. While there is much to celebrate this INSD, there is still much progress to be made.
Acknowledgements
With thanks to the brilliant Youth Representatives supporting the work of @MATES4Kids and our #INSD 2026 celebrations, including:: Tara Chelvham, Sienna Gates, Stella Haag, Chloe Iannitti and Bridie Macken.
References
Neonatalscreeningday.org. (n.d.). INSD – INSD. Retrieved June 24, 2026, from https://neonatalscreeningday.org/
WHO Department of Communications. (2026, June 23). WHO urges scale up of newborn screening to improve early detection and care of birth defects. World Health Organization. https://hq_who_departmentofcommunications.cmail19.com/t/d-e-wlhdykt-tjltclydr-t/
This year’s observation seems incredibly timely, with just mere days ago (June 23rd), the World Health Organization (WHO) releasing a new framework and call to action on the urgent need to grow and implement newborn screening programs globally. WHO emphasized the sheer number of needless and preventable deaths in low and middle-income countries (LMICS) due to delayed diagnosis and treatment.
Comprehensive Newborn Screening (NBS) Programs include a series of routine medical examinations and tests in the first days of life, allowing many life-threatening, congenital conditions to be diagnosed before symptoms appear. Early diagnosis allows for prompt treatment, reducing mortality, preventing disability, and ultimately improving health outcomes.
Since the 1960s, many countries have implemented national programs that have been screening newborn babies for a range of conditions. Examples of conditions routinely included in national NBS Programs include: congenital hypothyroidism (CH), phenylketonuria (PKU), glucose-6-phosphate dehydrogenase (G6PD), congenital adrenal hyperplasia (CAH), sickle cell disease (SCD), congenital heart disease (CHD), hearing and vision impairments. In recent years, it has become increasingly common for many more additional conditions to be added to national screening programs in higher-income countries (such as cystic fibrosis, severe combined immunodeficiencies spinal muscular atrophy), as more advanced therapies become available.
By contrast, NBS Programs are almost universally absent in low and middle income countries (LMICs). Newborn babies are not screened for conditions that are very easily and affordably treated, and experience profound disability and premature mortality as a result.
The aforementioned World Health Organization (WHO) framework and statement released on 23 June 2026 highlight the importance of urgently scaling universal access to neonatal screening. WHO explains that as infectious disease management improves in LMICS, a greater proportion of deaths for children under five years in LMICS are now due to birth defects (WHO Department of Communications, 2026). WHO explains how essential it is to ensure access to NBS is scaled in LMICs, acknowledging that in 2006, 90% percent of children born with serious birth defects were born in LMICS, and most deaths due to serious birth defects also occurred in LMICs (WHO Department of Communications, 2026).
On a positive note, WHO also shared some of the success stories emerging from nations across Africa, the Americas, and Asia, with increasing numbers of countries now implementing NBS programs. For example, the Philippines took a 24 hospital pilot program, and expanded it across 7000 hospitals that screen newborns for 29 different conditions. Sri Lanka now screens nearly 80% of newborns for CH. In India, 28 million newborns have been screened over three years, resulting in 900,000 thousand babies being diagnosed with conditions amenable to early treatment. Uganda has launched a program for identifying Sickle Cell disease in high burden areas (WHO Department of Communications, 2026) and Indonesia is now screening newborns for CH, CAH and G6PD. These success stories demonstrate that change is possible.
INDS is an international advocacy initiative, and the result of the joint and tireless work of some incredible partners: International Society for Neonatal Screening (ISNS), International Patient Organization for Primary Immunodeficiencies (IPOPI), European Society for Immunodeficies (ESID) collaborate through the Screen4Rare initiative, which aims to raise awareness for Neonatal Screening.
Simply put, neonatal screening doesn’t just save lives - it transforms lives. NBS gives #EVERYchild the opportunity to survive and thrive. An early diagnosis should not be a luxury. While there is much to celebrate this INSD, there is still much progress to be made.
Acknowledgements
With thanks to the brilliant Youth Representatives supporting the work of @MATES4Kids and our #INSD 2026 celebrations, including:: Tara Chelvham, Sienna Gates, Stella Haag, Chloe Iannitti and Bridie Macken.
References
Neonatalscreeningday.org. (n.d.). INSD – INSD. Retrieved June 24, 2026, from https://neonatalscreeningday.org/
WHO Department of Communications. (2026, June 23). WHO urges scale up of newborn screening to improve early detection and care of birth defects. World Health Organization. https://hq_who_departmentofcommunications.cmail19.com/t/d-e-wlhdykt-tjltclydr-t/
CONGRATULATIONS TONGA!Huge congratulations to Tonga on the 2026 establishment of newborn screening for Congenital Hypothyroidism and Congenital Adrenal Hyperplasia! This is a wonderful achievement for the Asia Pacific Region!
Especial acknowledgements must go to Dr George Aho, a paediatrician from Tonga who has led local efforts towards this ground-breaking change in child health in the region. We also acknowledge the tremendous support given by colleagues in New Zealand... together we are all stronger! At the upcoming UN High Level Political Forum in New York in July 2026 we will share more updates on the achievements of Tonga in this space... Please stay tuned for more updates! |
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