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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.

Importance of blood donation

Kooth – the mental health and wellbeing platform for young people 

Priapism and what to do if you experience it

Thalassaemia & Rare Inherited Anaemias

What is was like for me growing up with SCD

Young Minds | Mental Health Charity For Children And Young People

Being Heard – Haemoglobinopathy Coordinating Centre

Terminology

Childline | Free counselling service for kids and young people

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

Annual Report September 2025

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