About Us

Empowering Lives, Driving Change: Together Against Sickle Cell Disease.

Sickle cell is a progressive, lifelong illness that has long-term complications and affects everyone differently. Its symptoms are unpredictable and can be severe. This unpredictability can impact the quality of life on a daily basis for a person with sickle cell disease. In Ghana, approximately 15,000-18,000 babies are born every year with Sickle Cell Disease. Twenty-five percent (25%) of Ghanaians also carry the Sickle Cell Trait, this means that Sickle Cell Disease impacts every family directly or indirectly. Related health problems caused by Sickle Cell Disease ranges from infant mortality aneamia, jaundice, bone and pain crises, strokes, acute chest syndrome, kidney and liver problems, bone damage from avascular necrosis spleen damage, leg ulcers to mention a few. The silent damage of sickle cell is throughout a person’s life and without awareness or adequate treatment, the illness can impact a person’s self esteem and overall quality of life.

The Sickle Gene Action Foundation is dedicated to transforming the lives of individuals affected by Sickle Cell Disease (SCD). Our mission is to raise awareness, provide compassionate and dignified care, and advocate for innovative treatments. Our vision is to minimize Sickle Cell related deaths through stakeholder collaborations that reinforces standardized treatment and best practices in healthcare, affordable and comprehensive care for individuals. We are committed to early detection, effective management, and comprehensive support for SCD warriors and their families. Through national and international collaboration, we strive to improve quality of life, promote understanding, and ultimately find a cure for SCD. Join us in our mission to empower those affected and make a lasting impact.

OUR OBJECTIVES

Reduce stigma and raise awareness.
Reduce the mortality by promotion of New Born Screening in Ghana.
Address preventable SCD related deaths through SCD Treatment Guideline implementation.
Collaborate with funders, health providers, government agencies and other stakeholders to maximize the effectiveness awareness exercises through research outcomes in less privileged communities.
Provide SCD Education in local languages through use of technology.
Partner with religious groups (Christian, Islam, Traditional Groups) and community leaders to expand genetic counseling.
Facilitate routine blood donation drives.
A National watchdog to spotlight the works of SCD Patient Advocacy Groups in Ghana, SCD healthcare Communities, Family Support Groups and Initiatives, Government policies and their impact on fight against SCD in Ghana.
Guide and provide resources for Psychosocial, Nutritional, Academic and Employment Support Services.
Promote the establishment of the National SCD Resource Center of Excellence in Ghana.
Train and mentor National Sickle Cell Advocates.