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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.

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

Physical development advice for babies living with sickle cell disorder

The RHO Transition Project

Hip exercises for teenagers and adults living with sickle cell disorder

Exercise advice for teenagers and adults living with sickle cell disorder

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

Managing energy levels

Patient Public Voice (PPV) Group Application form

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

Being Heard – Haemoglobinopathy Coordinating Centre

Terminology