Who we are
International Sickle Cooperation (ISC) is a non-profit association whose purpose is to help maximize the physiological, psychological, and social well-being of people living with sickle cell disease in Angola, with a special focus on patients themselves.
We were created in response to the daily challenges faced by patients, families, caregivers, and health professionals, and we promote health diplomacy as a bridge for innovation, collaboration, and fair access to care. From Maryland, USA, we connect Angolan communities with global partners to turn solidarity into concrete programs that restore health, dignity, and hope.
The problem
Sickle cell disease is one of the most common severe genetic conditions worldwide, and Angola is among the countries with the highest prevalence.
Recent studies estimate that in Angola around 18–20% of the population carry the sickle cell trait, and more than 7,000 children are born with the disease every year. In some Angolan newborn screening initiatives, between about 1.7% and 3.3% of babies tested had sickle cell anemia (HbSS), showing how widespread and serious the condition is in several provinces. Without systematic early diagnosis and continuous care, many affected children face recurrent pain, infections, and anemia that can lead to preventable disability and death.
The impact on patients is profound and lifelong.
Sickle cell disease damages red blood cells, leading to chronic anemia, intense pain crises due to blocked blood vessels, vulnerability to severe infections, and increased risk of stroke and organ damage. In sub-Saharan Africa, under‑5 mortality among children born with sickle cell anemia is estimated to remain between 50% and 90% where screening and treatment are not widely available, which means that many children die without ever receiving a diagnosis or adequate care. In Angola, studies indicate that sickle cell disease is among the leading causes of infant death, with an estimated 1,000 children dying every year from the condition despite progress in infection control. These numbers translate into thousands of interrupted childhoods and unrealized human potential.
The burden on families is equally heavy. Caregivers of children with sickle cell disease often face a combination of financial stress, employment difficulties, emotional exhaustion, and social isolation. Research in African contexts shows that the majority of caregivers report frequent social disruption, high out‑of‑pocket health costs, and challenges in maintaining their jobs because of repeated hospital visits and crises, which destabilize family life and income.
Parents frequently must prioritize the health needs of the sick child over other family members, leading to sacrifices that affect siblings’ education, nutrition, and overall well-being.
At the societal level, sickle cell disease is a major yet under-recognized public health issue in Angola. Globally, it is estimated that in 2021 there were about 5.68 million people living with sickle cell disease and around 405,000 babies born with the condition in sub-Saharan Africa alone, with total deaths among people with sickle cell disease in the region reaching roughly 265,000 that year. In Angola, official data recorded 924 new cases in 2022, but the true number is likely much higher because screening is still not universal. This combination of high incidence, high early mortality, and lifelong disability creates a significant social and economic burden and highlights the urgent need for coordinated public, private, and faith-based action.
Because most patients and families affected by sickle cell disease are already living with economic vulnerability, strong social support is essential. Families need help covering the direct costs of care (medications, consultations, tests) and also indirect costs such as transport, missed workdays, and school interruption. They also need psychosocial support to cope with chronic pain, uncertainty, and stigma, which often leads to isolation and silence in many communities.
Social protection, community-based programs, and dedicated organizations like ISC are vital to ensure that patients in Angola are not left alone to carry a burden that should be shared by the whole society.
What are the key facts about sickle cell disease prevalence in Angola?
Key facts on sickle cell disease (SCD) prevalence in Angola include both national estimates and detailed newborn‑screening data from specific regions.
National-level estimates
- Angola is considered one of the countries with the highest prevalence of SCD in the world.[pmc.ncbi.nlm.nih];
- Scientific and clinical sources estimate that around 18–20% of the Angolan population carry at least one sickle cell allele (sickle cell trait).[esmed];
- This carrier rate is associated with an estimated “natural incidence” of roughly 15 infants with sickle cell disease per 1,000 live births (about 1.5%).[meddocsonline];
- An official estimate cited in international cooperation reports suggests that almost 2% of live births in Angola have sickle cell hemoglobinopathy.[agenciabrasil.ebc.com].
- A 2025 newborn screening study in Caluquembe (Huíla province) confirmed that Angola has one of the highest SCD prevalences globally and highlighted the need for universal neonatal screening.[pubmed.ncbi.nlm.nih];
- In this Caluquembe study (2024–2025), 353 newborns were screened; the prevalence of the HbS gene was 6.0% in infants without siblings with confirmed SCD, lower than in Luanda and Cabinda but still indicating substantial local burden.[journals.plos];
- Previous newborn screening at Bengo General Hospital (2014–2016) found that 22.8% of 359 newborns had sickle cell trait (HbAS) and 3.3% had sickle cell anemia (HbSS).[journals.plos];
- In Luanda maternity hospitals and vaccination clinics, around 21–22% of infants tested had HbAS and approximately 1.5–1.7% had HbSS, reinforcing that in some urban areas roughly 1 in 60–70 newborns has sickle cell anemia.[pmc.ncbi.nlm.nih].
Newborn screening data from Angolan hospitals
Public health impact indicators
- A 2025 review describes SCD explicitly as a major public health issue in Angola, with an estimated national population of about 34 million and 18–20% affected by sickle cell–related hemoglobinopathies (including carriers).[esmed];
- In 2022, 924 new SCD cases were officially recorded in Angola, but the article stresses that many cases remain undiagnosed because neonatal testing is recommended but not yet routine nationwide.[esmed];
- By 2020, one cooperation report noted 11,540 registered SCD cases in the country, again emphasizing that registry figures likely underestimate the real burden.[agenciabrasil.ebc.com].
How you can help
Your contribution powers a model of health diplomacy that turns compassion into concrete change for patients and families in Angola. By donating, you help ISC expand early screening initiatives, support better clinical follow-up, and strengthen community-based networks that care for people with sickle cell disease beyond the hospital walls. Each gift, whether large or small, helps to fill critical gaps in services that public systems alone cannot yet cover.
Supporting ISC means investing in the physical, emotional, and social well-being of some of the most vulnerable communities in Angola. Your donation helps us provide information and training for families and caregivers, create safe spaces for psychosocial support, and advocate for policies that protect patients’ rights and access to quality care. When you give, you are standing alongside parents who are fighting every day for their children’s lives, health professionals who need more tools, and young people who dream of a future not defined by their diagnosis.
The impact of your generosity goes far beyond individual households; it strengthens the entire Angolan society. Healthy children can stay in school, parents can remain in the workforce, and communities can redirect scarce resources from emergency care to prevention and long-term development. By partnering with ISC from New York, you help build a more just and equitable world in which geography does not determine whether a child with sickle cell disease has a chance to live and thrive.