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 15,000-20,000 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.

Due to the extensive impact the disease, The Sickle Gene Action Foundation (SGAF) has resolved to raising awareness and empowering people with Sickle Cell Disease throughout the country. SGAF has become the trusted voice for Sickle Cell Disease advocacy in Ghana, the epicenter of Sickle Cell Disease treatment initiatives in African.

Our goal is to improve the quality of lives for individuals with sickle cell disease in Ghana through early action in these major areas:

•Early diagnosis

•Early life saving treatment

•Early advocacy and awareness support services for Sickle Cell Disease

 

Our mission is to expand public awareness about Sickle Cell Disease in Ghana through advocacy and empowerment of individuals with Sickle Cell and the treatment community by promoting evidence-based quality healthcare, support group mobilization, and to promote legislation towards a National Sickle Cell Agenda in Ghana.

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 with Sickle Cell Disease and within targeted skill development within Sickle Cell treatment community.

Our Objectives

1. Reduce stigma and raise awareness about Sickle Cell Disease (SCD) in Ghana.

2. Reduce the mortality rate by promoting the implementation of New Born Screening in all 16 regions in Ghana through education, government policy, and research on early detection in Ghana.

3. Advocate and address preventable SCD related deaths through the Implementation of SCD Treatment Guidelines implement standardized best practices across Ghana

4. Collaborate with funders, providers, government agencies and other stakeholders to maximize the effectiveness awareness exercises through research outcomes to help direct resources less privileged communities in Ghana

5. Provide SCD Education in local languages incorporated with technology into the management of SCD and treatment (utilization of an app-based technology, resources phone education to patients and their families across all ethnic groups in Ghana)

6. Partner with religious groups (Christian, Islam, Traditional Groups) and community leaders to educate and expand genetic counseling within their respective communities.

7. Facilitate routine blood donation drives to boost local blood banks and make blood transfusion accessible for people with Sickle Cell Disease

8. Serve as 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

9. Guide and provide individuals with SCD with resources for Psychosocial, Nutritional, Academic and Employment Support Services.

10. Promote the establishment of the National SCD Resource Center of Excellence in Ghana making SCD a national healthcare priority through government legislature.

For world Sickle Cell Day on June 19th we are raising support to sponsor 100 individuals with Sickle Cell Disease with their medical bills for one year. We would like your help to raise these funds to save a life.

Thank you

Sickle Gene Action