Useful Resources for Haemoglobinopathies | Support & Guidance

Discover a wealth of useful resources tailored to patients, families, caregivers and support networks whose life is touched by Sickle Cell Disorder (SCD). This page provides a curated collection of tools, guides, and links to external organisations, designed to help those with SCD live your life. Here we aim to provide holistic information to treat the whole person; financial, nutrition, exercise and social support for everyday life, empowering you to live your best life.

Establishing a foundation for good nutritional status

What to do in a crisis or when you’re in hospital Advice for teenagers and adults living with sickle cell disorder

Managing energy levels

Being Heard – Haemoglobinopathy Coordinating Centre

Upper limb exercises for teenagers and adults living with sickle cell disorder.

How to manage malnutrition risks in children living with sickle cell disorder

Ready Steady Go – Transition: moving into adult care

Managing Pain

The Sickle Cell Nutrition Eatwell Guide – A foundation to support healthy eating

Hip exercises for teenagers and adults living with sickle cell disorder

Physical activity advice for young people and teenagers living with sickle cell disorder

Staying active with Sickle Cell Disorder: General advice for children, young people, and families