Sickle cell disease is a genetic disorder characterized by abnormal hemoglobin molecules in red blood cells, leading to their deformation into a sickle or crescent shape. These abnormal cells can cause blockages in blood vessels, leading to episodes of pain, organ damage, and increased susceptibility to infections. Although there is no cure, management of sickle cell disease involves a combination of medications to alleviate symptoms, blood transfusions, and treatments to prevent complications, such as hydroxyurea and bone marrow transplantation in severe cases.
Patients are the experts in their condition and advocacy groups provide a platform for patient voices. Working directly with these communities is the key to pushing research forward in an inclusive way.
Sickle cell disease impacts over 100,000 individuals in the United States and 20 million people globally. In the U.S., the majority of those affected are of African descent or identify as Black. It's time to bring this condition into the spotlight, shedding light on its complexities and offering support to those navigating its challenges.
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We’ve committed to having 500,000 conversations in the next three years, to equip ourselves and our Pharma partners with the insights needed to increase predictability.
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The ever-growing investment in advocacy doesn’t appear to be slowing down, and research is certainly seeing the benefits. Which at the end of the day, means better patient care and more options for patients.
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We’re ready to keep forming links between our Advocacy friends and Pharma partners, so these fruitful relationships continue to evolve beyond the study-to-study view.
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