Your care team

Thalassaemia touches many parts of the body, so the best care comes from a multidisciplinary team — haematology alongside cardiology, endocrinology (hormones), hepatology (liver), nursing, dietetics, psychology and social work, ideally at a specialist reference centre.

You are the most important member of that team. Keeping your own records, asking questions, and bringing a summary to appointments all help you get joined-up care — and MUIY is built to make that easier.

If you don’t have access to a specialist centre, ask your doctor how monitoring can still be organised, and lean on patient organisations for support and advocacy.