Why Sickle Cell Shine Initiative [SCSI] Exists

Our story

Sickle Cell Disorder is one of the most common genetic blood conditions in the UK, yet it remains widely misunderstood and under-prioritised.

Too many people living with SCD experience delayed pain relief, stigma in healthcare settings, and a lack of informed support, leading to avoidable suffering and poor outcomes.

A glass of water, a stethoscope, a digital thermometer, a blister pack of capsules, a blister pack of tablets, a small container with ointment, and a cotton swab on a white surface.

Driven by lived experience

Sickle Cell Shine exists to challenge these inequities by amplifying lived experience, increasing awareness, and advocating for systems that treat people with SCD with urgency, compassion, and respect.

Close-up of a patient's hand with IV cannula, in a hospital setting, held by a person wearing red shirt.

“It was a great pleasure to be part of the event. All the participants and all the topics were great and amazing. I personally learned a lot about sickle cell!”

- Past Event Attendee