Advancing awareness, dignity, and care for sickle cell.
Sickle Cell Shine Initiative raises awareness, empowers people with Sickle Cell Disorder, and advocates for equitable healthcare in the UK and beyond.
Who We Are
Sickle Cell Shine Initiative (SCSI) is an emerging, lived-experience-led initiative rooted in Southeast London, with a wider UK focus.
We exist to address the persistent gaps in awareness, understanding, and equitable care faced by people living with Sickle Cell Disorder (SCD).
Our work is grounded in community voice, dignity, and the belief that no one living with SCD should be unheard, misunderstood, or left behind.
Event Spotlight
In September 2025, Sickle Cell Shine Initiative hosted its inaugural community event, bringing people together to listen, learn, and reflect.
Our launch event created space for open conversation around lived experience, awareness, and the realities of navigating Sickle Cell Disorder.
It marked an important early milestone for SCSI, helping to inform our direction and build relationships grounded in trust, care, and shared purpose.
Bianca Matthews (Digital Change Manager) & Joe Duggan (Community Development Worker) delivering a Panel Session at the event
Cross-section of attendees at the event
Cllr Paul Bell delivering his session at the event
Isiorono Igho-Orienru (Team Lead/Founder, SCSI) & Cllr Paul Bell (Cabinet Member for Health, Wellbeing and Adult Social Care, Lewisham)
Our launch event created space for open conversation around lived experience, awareness, and the realities of navigating Sickle Cell Disorder.
It marked an important early milestone for SCSI, helping to inform our direction and build relationships grounded in trust, care, and shared purpose.
We offer a space for thoughtful conversations with community organisations, professionals, and partners who are interested in understanding our work, sharing insight, or exploring ways to collaborate.
These conversations are exploratory and relationship-focused, helping us learn, align, and build meaningful connections as the initiative continues to develop.
This space is not for medical advice, clinical consultations, or emergency support. If you are seeking urgent medical assistance, please contact the appropriate healthcare services.
Work With Us
Our Founder
Our founder brings lived experience, strategic thinking, and a deep commitment to community into the heart of Sickle Cell Shine Initiative.
Shaped by personal insight and practical experience, he approaches this work with both clarity of vision and care for the people most affected.
This balance informs how SCSI listens, collaborates, and builds toward long-term, meaningful change.
Isiorono Igho-Orienru
Follow Isiorono & SCSI on social
Contact us
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