What if a simple blood test before marriage could transform countless lives? In Niger, this question isn’t hypothetical—it’s a lifeline. The Centre National de Référence de la Drépanocytose (CNRD) in Niamey stands at the forefront of a silent crisis, where families face heartbreaking choices due to a lack of resources and awareness.

The director of the CNRD, Dr. Mariam Boureima Djibo, shares a story that haunts her to this day: a father, overwhelmed by poverty, had no choice but to abandon his child at the center because he couldn’t afford the necessary medication. This devastating reality underscores the urgent need for stronger medical and social support systems in the country.

Each year, thousands of children in Niger are born with sickle cell disease, a painful and often misunderstood genetic condition. While awareness remains low, the CNRD is leading a nationwide effort to turn the tide. The disease occurs when a child inherits the defective gene from both parents (homozygous SS form), a scenario that’s far too common due to the high number of carriers who are unaware of their status.

Prevention starts with awareness

The CNRD is championing prenupial screening and genetic counseling as critical tools to prevent the transmission of sickle cell disease. These initiatives empower couples at risk to make informed decisions before starting a family. The center’s advocacy for free medication, expanded social assistance, and family support programs reflects its commitment to making healthcare accessible to all, regardless of financial means.

A landmark initiative—the neonatal screening program—was launched at the Maternité Issaka Gazobi in Niamey. This program has already identified newborns with sickle cell disease early, enabling swift and tailored care. Dr. Marie Ousseini, a pediatrician involved in the project, emphasizes its life-changing impact: “Early detection gives these children a real chance at a healthier, longer life with far less suffering.”

Holistic care for families

The CNRD’s strategy extends beyond medical treatment. It includes community sensitization, medical staff training, and psychosocial support for families. Key efforts involve:

• Regular medical follow-ups to monitor patients’ health.
• Subsidized medication to ease financial burdens on families.
• Therapeutic education to teach patients and caregivers how to manage the disease.
• Psychological support to address the emotional toll on families.
• Collaboration with patient associations to amplify advocacy efforts.

Under Dr. Mariam’s leadership, the CNRD has achieved remarkable milestones, including the creation of an intensive care unit, the recruitment of specialists (psychologists, epidemiologists, intensivists), and the acquisition of state-of-the-art equipment. In 2024 alone, over 2,000 young people benefited from free screenings, and community awareness campaigns reached thousands more.

Building a sustainable future

Looking ahead, the CNRD has ambitious plans to expand its impact:

• Roll out prenupial screening across all regions.
• Improve health information systems for better data-driven decisions.
• Strengthen psychosocial support to address the emotional and social challenges faced by families.
• Integrate sickle cell disease into national health policies.
• Construct a new specialized center in Niamey to accommodate the growing demand.
• Organize annual awareness events to keep the conversation alive.

The fight against sickle cell disease in Niger is far from over, but it’s not insurmountable. Success hinges on a multi-faceted approach: prenupial screening for young adults, parental education, community engagement, and government commitment to inclusive health policies. With these pillars in place, the goal of reducing suffering and saving lives becomes achievable.

The World Health Organization (WHO) has been a steadfast ally in this battle. During the World Sickle Cell Day on June 19, 2024, the WHO donated crucial medications and medical supplies to the CNRD—a gesture that significantly bolstered patient care. Ms. Asmaou Salifou, a mother of eight children (three of whom have sickle cell disease), expressed her profound gratitude for this support, calling it “a lifeline for my family.”

Beyond material aid, the WHO is committed to strengthening the CNRD’s capabilities. During an official visit on January 28, 2025, Dr. Casimir Manengu, the WHO’s interim representative in Niger, praised the center’s work and urged its decentralization to reach more communities nationwide. He stated, “This specialized center deserves to be expanded so no one in need is left behind.”

The WHO’s plans include mobilizing technical and financial partners, advocating for policy changes, and supporting scientific research to inform better decision-making. These efforts highlight the organization’s dedication to creating a sustainable impact in the fight against sickle cell disease in Niger.