Our Vision
We want to establish a standardized pathway for survivorship that integrates education, psychosocial wellbeing, and long-term health navigation, ensuring that patients and care partners are well equipped to make informed decisions and sustain their health beyond the transformative treatment itself.
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Our vision is to build a global framework in which lived experience informs clinical practice, community engagement strengthens outcomes, and survivors of bone marrow transplant or gene-based therapies are fully supported in redefining their identity, health, and quality of life.
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Health systems need to understand that survivorship is a critical component of sickle cell care and our hope is that we can prioritize this overlooked step into a structured, compassionate, and empowering continuum that ensures every patient not only survives, but thrives.
Our Reach
Our Community Impact
Each year, we evaluate the progress we’ve made in expanding education, strengthening patient navigation, amplifying survivor + caregiver storytelling, and supporting long-term wellness after transplant or gene-based treatment.