Genetix Biotherapeutics Inc. and the National Football League Alumni Association today announced a partnership to launch a national awareness and education initiative for sickle cell disease. Through community engagement, the partnership will raise greater awareness of the difficulties of living with sickle cell disease, while helping individuals, families, and healthcare providers better understand available treatment options and support services. Many families are unaware that FDA-approved genetic medicines, including one-time transformative gene therapies, are available today and have proven to dramatically transform the lives of many people impacted by the disease.
Sickle cell disease is a severe rare disease and the most common inherited blood disorder in the U.S., affecting approximately 100,000 people and disproportionately impacting Black communities. Caused by a genetic mutation that leads to abnormal hemoglobin, sickle cell disease can result in serious lifelong complications including pain crises, stroke, organ damage, and reduced life expectancy, significantly impacting health and quality of life. While treatment has historically focused on symptom management, recent advances in genetic medicine have enabled the availability of one-time, transformative treatment options.
“For decades, Genetix has been committed to the sickle cell disease community, working alongside patients, families, advocates, and healthcare providers to advance care. Partnering with this community led to the development of an FDA-approved, one-time transformative treatment, making genetic medicine a reality for many people living with this debilitating disease,” said David Meek, Chief Executive Officer at Genetix. “Yet despite hundreds of patients now treated, the vast majority of eligible patients remain untreated, primarily due to lack of awareness that these treatment options are available today. We are excited that together with the National Football League Alumni Association, we will expand education and foster meaningful community conversations to improve the quality of life of those living with sickle cell disease.”
“The National Football League Alumni Association is proud to partner with Genetix to widen awareness and promote education on treatment options for people with sickle cell disease,” said Brad Edwards, Chief Executive Officer of the National Football League Alumni Association. “Many former NFL players and their families understand firsthand the devastating impact of this disease and the importance of ensuring patients and families have knowledge and access to available treatment options. By elevating personal stories with local community engagement from current and former players, we aim to raise awareness and connect patients and families with educational resources that support actionable next steps.”
Read Also: VB Spine Completes Transaction for CT-Fluoro Technology from Augmedics
