Cleft lip and cleft palate are among the most common congenital anomalies worldwide, with an estimated global occurrence of approximately 1 in 700 live births. 1
Their contribution to global disease burden is reflected in disability-adjusted life years (DALYs), estimated at 6.85 per 100,000 population globally.
Epidemiological data indicate that over 80% of the global burden of orofacial clefts is concentrated in low-resource settings, where access to surgical and rehabilitative care remains limited.
It is higher in low- and middle-income regions, with Sub-Saharan Africa (13.11 DALYs per 100,000) and South Asia (10.84 DALYs per 100,000) reporting the highest rates, followed by the Middle East/North Africa and East Asia.
In contrast, lower rates are observed in Europe, Central Asia, and North America. These disparities reflect differences in access to surgical care, early intervention, and healthcare infrastructure, highlighting the need for targeted public health efforts.
According to the Centers for Disease Control and Prevention, cleft lip and cleft palate are congenital (birth) defects that occur when a baby’s facial structures do not form properly during early pregnancy.
A cleft lip occurs when the tissue that forms the upper lip does not fully join before birth, resulting in an opening that may range from a small notch to a large gap extending into the nose.
A cleft palate occurs when the roof of the mouth (palate) fails to fuse completely, leaving an opening that can affect the front, back, or entire palate.
Together, these conditions are referred to as orofacial clefts. If untreated, they can lead to difficulties with feeding, speech, hearing, dental development, and recurrent ear infections.
Several global and India-based non-governmental organizations (NGOs) play a crucial role in providing surgical care and long-term management for individuals with cleft lip and palate, especially in low-resource settings.
This is the largest cleft-focused NGO globally, working in more than 90 countries. It has supported over 2 million cleft surgeries worldwide, including 700,000+ surgeries in India across 150+ hospitals.
Smile Train follows a sustainable model by empowering local surgeons and hospitals to deliver year-round, free cleft care. Its support extends beyond surgery to include speech therapy, orthodontics, nutritional care, and psychological support.
With over four decades of experience, Operation Smile provides free cleft repair surgeries and dental care across more than 40 countries.
The organization focuses on building local healthcare capacity by training professionals and strengthening systems, while also offering multidisciplinary care, including surgical, dental, and psychosocial services.
Mission Smile works toward a “Cleft-Free India” by conducting focused surgical outreach programs lasting 5–7 days, alongside establishing permanent comprehensive cleft care centers.
The organization emphasizes accessibility and continuity of care in underserved regions.
Based in Bengaluru and partnered with Deutsche Cleft Kinderhilfe, ABMSS operates 14+ centers across India. It provides free, comprehensive cleft care, including surgical treatment, orthodontics, and speech therapy, ensuring long-term rehabilitation for patients.
An initiative of the Indian Dental Association, this foundation focuses on holistic cleft care, covering not only surgical correction but also speech therapy, hearing support, and nutritional rehabilitation, particularly for children.
American Cleft Palate Craniofacial Association promotes multidisciplinary, team-based cleft care
Children’s Craniofacial Association provides emotional and financial support to families
FACES The National Craniofacial Association assists with medical, travel, and psychosocial needs
Cleft lip and cleft palate require multidisciplinary, long-term care beyond surgical repair. NGOs across the globe and in India are addressing this need by providing free surgeries, strengthening healthcare systems, and ensuring rehabilitation services, significantly improving access and outcomes for affected individuals.
References
Kantar, Ramzi S., Zaher U. Hamdan, John N. Muller, et al. “Global Prevalence and Burden of Orofacial Clefts: A Systematic Analysis for the Global Burden of Disease Study 2019.” Journal of Craniofacial Surgery 34, no. 7 (October 1, 2023): 2012–2015. https://doi.org/10.1097/SCS.0000000000009591.
Centers for Disease Control and Prevention. “Cleft Lip and Cleft Palate.” Last modified January 2024. https://www.cdc.gov/birth-defects/about/cleft-lip-cleft-palate.html.
