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.
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.
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
Geographical Reach
We serve patients across North America, with growing engagement in Africa, the Caribbean, and global diaspora communities.
Our top locations across our social media platforms are - U.S, Nigeria, United Kingdom, Tanzania, Canada, Ghana, Uganda, and Jamaica.
Audience Served
We currently serve:
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Patients with sickle cell disease
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Survivors of transformative therapies (transplant or gene therapy)
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Care partners
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Community-based organizations
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Clinicians and researchers
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Industry partners who use our insights
Partnerships
Strengthened by the partnerships we build across the sickle cell and rare disease ecosystem, we collaborate with CBOs, clinicians, researchers, and industry leaders who share our commitment to improving education, and access for patients pursuing transformative therapies.
Digital Presence
We maintain an active digital presence across multiple platforms (+9.5K followers), creating a trusted space for sickle cell warriors, caregivers, and clinicians to connect, learn, and find support. Our online footprint includes LinkedIn, Instagram, YouTube, TikTok, X, and Facebook.
Our Global 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.