Our Mission

While research and new treatments are essential for the future, people living with sickle cell also need practical support today. Our focus is helping people navigate healthcare, understand their rights and access the support they need every day.

The Sickle Cell Care Collective exists to improve the day-to-day experience of living with sickle cell disease.

While many organisations focus on research, treatment development and long-term policy change, our focus is on practical support that can make a difference today.

We believe that no one living with sickle cell should have to navigate healthcare, benefits, pain management or daily life without the information, tools and support they need.

Our work focuses on:

  • Improving access to personalised pain plans
  • Supporting patients to better understand and advocate for their care
  • Increasing healthcare professional understanding of sickle cell disease
  • Helping people navigate benefits, services and support systems
  • Connecting individuals, families and carers with practical resources and community support
  • Amplifying the lived experiences of people affected by sickle cell

We are committed to providing clear, practical and actionable support that helps people feel informed, empowered and better equipped to manage life with sickle cell.

Our Programmes

Three healthcare professionals standing together in medical attire: a woman in a maroon scrub top on the left, a man in a navy blue scrub top in the center, and a woman in a white doctor coat on the right, each with a stethoscope around their necks.

Beyond the Crisis

Supporting healthcare professionals to improve sickle cell care through education, patient insight and evidence-based best practice.

Focus areas:

  • Sickle cell education & training
  • Patient experience & lived insight
  • Crisis care best practice
  • Clinical resources & guidance
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A woman stands in front of a directional signpost with words like UNDERSTAND, PREPARE, ACCESS SUPPORT, TAKE CONTROL, LIFE & WORK, and GUIDANCE, with a lighthouse and seaside path in the background at sunset.

The Care Navigator

Practical guidance and signposting for everyday life with sickle cell.

Focus areas:

  • Understanding your condition
  • Building your healthcare team
  • Benefits and financial support
  • Wellbeing and self-management
  • Family and relationships
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A doctor in navy blue scrubs sits at a table talking with a patient in a warm, modern clinic. A digital clipboard with medical records is held between them, with abstract digital icons of a clipboard, user profile, chat bubble, and document floating above them on the wall.

The Pain Plan Project

Helping people understand, access and use personalised pain plans.

Focus areas:

  • What a pain plan is
  • How to obtain one
  • Understanding your rights
  • Using pain plans effectively during hospital admissions
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Five people seated in a circle in a bright indoor space, with speech bubbles and head silhouettes displayed on the wall behind them.

Voices in Crisis

Capturing and amplifying the lived experiences of people affected by sickle cell.

Focus areas:

  • Patient surveys
  • Experience reports
  • Community insights
  • Research partnerships
  • Advocacy informed by real experiences
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