As part of our advocacy efforts, Plasma of Hope has collaborated with Pfizer UK to raise awareness about sickle cell disease. Pfizer has a commendable track record of engaging with stakeholders who share the common objective of enhancing care for patients with sickle cell disease, both in the United States and globally.
On June 8th, 2023, our CEO, Marie-Claire Kofi, had the privilege of joining Owen Marks, Head of Rare Diseases and Diversity and Inclusion Co-Chair at Pfizer UK, and Perla Eleftheriou, a Consultant Haematologist at UCLH in London, along with sickle cell advocates from various parts of London. We convened at the Sound Company Recording studio in London to promote awareness about sickle cell disease and engaged with radio stations across the nation.
During this gathering, Marie-Claire courageously shared her personal story of living with sickle cell disease and expressed her commitment to fully increasing awareness about the condition possible.
Insights from the Sickle Cell Health Awareness, Perspective, and Experiences (SHAPE) survey, as well as the No One’s Listening Report, have shed light on concerns and challenges raised by patients, caregivers, and healthcare professionals regarding the care and management of sickle cell disease.
Insufficient awareness and education about sickle cell disease often result in inadequate patient care and health disparities. It was truly inspiring to hear about the progress being made across the National Health Service (NHS) in improving the management of sickle cell disease, as shared by one of the consultants. We aspire for these advancements to be implemented on a national scale, extending beyond the boundaries of London.
Marie-Claire’s personal experience has revealed that most individuals, including healthcare professionals, genuinely desire to provide assistance. She firmly believes that equipping healthcare professionals with the necessary tools, training, and education for managing patients with sickle cell disease will empower them to deliver the best possible treatment and care to individuals living with sickle cell disease.