The Many Faces and Lives of Sickle Cell - A Global Collaboration

Product Description What is Sickle Cell Disease? Who does it affect? As one of the world's most common genetic disorders, why is it that sickle cell disease is also deemed to be one of the world's most neglected, under-researched and under-funded genetic diseases? Gain insight into Sickle Cell Disease through the eyes of 30+ complete strangers of all ages, cultures, language backgrounds and from all walks of life hailing from Africa to Australia and beyond. They have come together to share common but also uniquely personal experiences. Follow the lives of sickle cell warriors, caregivers and advocates as they navigate their way through love, loss, pain and an array of trials and tribulations of living with and advocating for Sickle Cell Disease. These are their stories of courage, heartbreak, resilience, and hope. About the Author Agnes Nsofwa is a Global Health Advocate and consultant specialising in Sickle Cell Disease (SCD) and Mental Health. Agnes is the creator of different initiatives to enhance sickle cell awareness around the world. A mother of four, her world changed when her daughter was diagnosed with sickle cell anaemia over 13 years ago, starting with changing her career from the Business world to becoming a Registered Nurse, Agnes has since founded three organisations to advocate for SCD. In Australia, she founded Australian Sickle Cell Advocacy Inc, the only sickle cell organisation predominantly supporting people impacted by SCD in Australia. In Zambia her home country, she co-founded Zambian Network of SCD, a national organisation raising awareness about SCD in all parts of Zambia, and on the global scene, Agnes founded Amplify Sickle Cell Voices International Inc, an organisation created by sickle cell warriors, caregivers, and advocates with a view of empowering these stakeholders to use their voice to change the sickle cell disease narratives. Agnes has featured on the Australian 7 News Channel and SBS News to raises awareness about sickle cell disease which is considered a rare disease in Australia. Agnes has also featured on different podcasts, different online media and has participated in numerous conferences. Agnes has been recognised by the Health Minister of Australia numerous times commending her for the work to increase sickle cell awareness in Australia.