Where Fabry disease is treated
NHS specialist centres in the UK
Fabry disease is rare enough that care is deliberately centralised. Diagnosis, enzyme replacement therapy and specialist monitoring are commissioned through a small number of designated lysosomal storage disorder (LSD) centres, rather than at every local hospital.
Always confirm current details before travelling. Centre names, contact details and referral routes can change. Your GP, local metabolic team, or the MPS Society can confirm the most current list and help arrange a referral. This page is a general guide, not a booking service.
England — adult centres
NHS England commissions Fabry disease diagnosis and treatment through five highly specialised adult centres.
Royal Free London — Lysosomal Storage Disorders Unit
LondonRoyal Free Hospital, Pond Street, London NW3 2QG
DiagnosisERT & oral therapyMultidisciplinary clinicsNational Hospital for Neurology & Neurosurgery (UCLH) — Charles Dent Metabolic Unit
LondonQueen Square, London WC1N 3BG
DiagnosisERT & oral therapyNeurology-linked careSalford Royal Hospital
ManchesterStott Lane, Salford M6 8HD
DiagnosisERT & oral therapyJoint adult/paediatric clinicsQueen Elizabeth Hospital Birmingham
BirminghamMindelsohn Way, Edgbaston, Birmingham B15 2GW
DiagnosisERT & oral therapyCambridge University Hospitals — Lysosomal Disorders Unit
CambridgeAddenbrooke's Hospital, Hills Road, Cambridge CB2 0QQ
DiagnosisERT & oral therapyEngland — paediatric centres
Three nationally commissioned centres manage children with lysosomal storage disorders, working closely with adult centres for transition to adult care.
Great Ormond Street Hospital — Metabolic Medicine
LondonGreat Ormond Street, London WC1N 3JH
Royal Manchester Children's Hospital — Willink Metabolic Unit
ManchesterOxford Road, Manchester M13 9WL
Birmingham Women's & Children's Hospital — Metabolic Medicine
BirminghamSteelhouse Lane, Birmingham B4 6NH
Scotland, Northern Ireland & Wales
Scotland
Inherited Metabolic Disorders in Scotland (IMD Scotland) is the managed clinical network that coordinates care for inherited metabolic disorders, including Fabry disease, across NHS Scotland. Its service is based at the Queen Elizabeth University Hospital & Royal Hospital for Children campus in Glasgow (NHS Greater Glasgow and Clyde), working with local health boards for day-to-day and shared care.
Northern Ireland
Belfast City Hospital provides paediatric and adult metabolic services, including care for Fabry disease, sometimes working jointly with English centres for specific aspects of treatment.
Wales
Similarly, patients in Wales are usually referred into an English centre for specialist LSD care, often alongside a local hospital for shared monitoring and infusions closer to home.
Cross-border referral arrangements can change — your GP or local health board can confirm the current pathway, and the MPS Society's advice line can help you understand what to expect.
How referral works
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1. Suspicion or family diagnosis
A GP, another specialist, or a family diagnosis prompts consideration of Fabry disease — sometimes after years of unexplained symptoms such as pain, kidney or heart findings.
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2. Referral to a specialist centre
Your GP or hospital consultant refers you to one of the centres above for enzyme and/or genetic testing. You don't need to live near a centre to be referred there — these services see patients from across the UK.
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3. Diagnosis & baseline assessment
If confirmed, the specialist team carries out baseline assessments of the kidneys, heart and nervous system to understand how the condition is affecting you.
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4. Ongoing care
Many people are monitored regularly at the specialist centre, with treatment (if needed) often able to move to a local hospital or homecare once established, in coordination with the specialist team.