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.

Help for Children and Young Person’s with Sickle Cell Disorder

Managing common nutritional problems

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

Being Heard – Haemoglobinopathy Coordinating Centre

Managing energy levels

Managing Pain

Core (trunk) exercises for teenagers and adults living with sickle cell disorder

Ready Steady Go – Transition: moving into adult care

Annual Report September 2025

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

Knee exercises for teenagers and adults living with sickle cell disorder

Hip exercises for teenagers and adults living with sickle cell disorder