Centres of expertise

UK porphyria centres are located in key areas around the country. The four main centres of expertise are based in London, Cardiff, Leeds and Salford. All four offer both acute and cutaneous clinical and laboratory services. They are able to offer full diagnostic and testing services, as well as clinical advice.

Other locations in the UK offer specific porphyria services. Search below to find the centre relevant to your location and specific needs.

Acute care

National Acute Porphyria Service (NAPS): NAPS provides clinical advice and haem arginate where appropriate for patients having one-off acute attacks or recurrent attacks of porphyria. There are two full NAPS centres and two associate centres in England and Wales (see below for details on NAPS Scotland):

  • Kings College Hospital, London
  • University Hospital of Wales, Cardiff
  • Salford Royal Hospital, Salford
  • St James University Hospital, Leeds

Initially, your doctor would need to contact the emergency number at the University Hospital of Wales: 029 2074 7747. This 24/7 number should be used at all times for new patients, and out of working hours for existing NAPS patients.

Unless urgent, always ask your doctor for a referral.

NAPS Scotland

NAPS Scotland: NHS Scotland has finalised arrangements to commission support for Scottish acute porphyria patients and their doctors from the English NAPS service. The new arrangements came into operation as of 1 April 2016.

A formal agreement has been made to enable shared care between NAPS doctors (mainly Dr Mike Badminton from Cardiff) and either Dr Alison Cozens or Dr Peter Galloway from Scotland. Outreach clinics will be held once every six months in either Edinburgh or Glasgow. This means that patients in Scotland suffering attacks of an acute porphyria will benefit from the knowledge and best practices of NAPS, while still being seen through an effective network with local porphyria specialists. Doctors caring for hospitalised patients will be able to access the NAPS out-of-hours clinical advice service, which will ensure appropriate access to haem arginate treatment for patients in Scotland.

Cutaneous care

Many of the skin porphyrias will be diagnosed and dealt with by local dermatologists. In particular, those with PCT will often find local dermatologists very knowledgeable about their condition and they may never need to see a porphyria specialist.

In many cases, however, specialist porphyria care will be required, and if this is the case, please see the following list of cutaneous porphyria centres/medical professionals.

Unless urgent always ask your doctor for a referral.

University Hospital of Wales *

The Cardiff Porphyria Service provides a clinical service for acute and cutaneous porphyrias. The Clinical Biochemistry Department provides a comprehensive biochemical diagnostic testing and advisory service that includes specialist genetic diagnostic testing.

Department of Medical Biochemistry & Immunology
University Hospital of Wales
Heath Park
CF14 4XW

Dr Mike Badminton MB,ChB, PhD, MRCPath,
Tel: (Sec) 029 207 42809
Fax: 029 207 48383
Email: Mike.Badminton@wales.nhs.uk

The Welsh Medicines Information centre, based at University Hospital Wales provides information relating to porphyria including the Porphyria SAFE Drugs list and telephone advisory service. The Cardiff Porphyria service available at www.cardiff-porphyria.org has more information on the services available.

Kings College Hospital, London *

Clinical services for acute and cutaneous porphyrias are based at King’s College Hospital and St Thomas’s Hospital. The Clinical Biochemistry Department, King’s College Hospital provides a comprehensive biochemical diagnostic testing and advisory service.

Prof. David Rees
Department of Haematological Medicine
King’s College Hospital NHS Foundation Trust
Denmark Hill
London, SE5 9RS
Tel: 020 3299 4181 (sec.)

Dr Penny Stein
4th floor, Hambleden Wing West
King’s College Hospital NHS Foundation Trust
Denmark Hill
London, SE5 5RS
Tel: 07890 252396
p.stein@nhs.net

Dr Joanne Marsden
Department of Clinical Biochemistry
Tel: 020 3299 3856.
joannemarsden1@nhs.net

Salford Royal Hospital, Salford *

Clinical service for acute and cutaneous porphyrias based at Salford Royal NHS Foundation Trust, Salford. The Clinical Biochemistry Department, Salford Royal NHS Foundation Trust provides a comprehensive biochemical diagnostic testing and advisory service.

Prof. Felicity Stewart
Consultant in Clinical Biochemistry
Department of Clinical Biochemistry
Salford Hospital
Stott Lane
M6 8HD
Tel: 0161 206 4961
felicity.stewart@srft.nhs.uk

St James' University Hospital, Leeds *

Clinical service for acute and cutaneous porphyrias. The Clinical Biochemistry Department, United Leeds Teaching Hospitals provides a comprehensive biochemical diagnostic testing and advisory service.

Dr Julian Barth
Old Medical School
Leeds General Infirmary
Leeds,  LS1 3EX
Email: julian.barth@leedsth.nhs.uk
Telephone: 0113 39 23416 / 0113 20 64852

Dr Mick Henderson: Consultant Biochemist or Mr Tim Degg: Senior Biomedical Scientist
Pathology Services,  Leeds Teaching Hospitals NHS Trust
Old Medical School
Leeds General Infirmary
Leeds,  LS1 3EX
Telephone: 0113 20 66861 / 0113 20 66063

Glasgow and Edinburgh

Glasgow Royal Infirmary (Glasgow)
Dr Peter Galloway
Macewen Building
Glasgow Royal Infirmary
Glasgow
G4 0SF

Edinburgh and Dundee
Dr Alison Cozens – Lead Clinician National Managed Clinical Network for Inherited Metabolic Disorders (IMD Scotland)
Royal Hospital for Sick Children
Sciennes Rd
Edinburgh
EH9 1LF

Dublin

Dublin porphyria services
The Biochemistry Department, St James’s Hospital, Dublin provides a porphyria diagnostic service for the Republic of Ireland

Dr Vivion Crowley
St James’s Hospital
Biochemistry Department
Central Pathology Laboratory
Dublin 8
vcrowley@stjames.ie
Telephone: (+353) 1 416 2935 or (+353) 1 410 3000

University Hospital of Wales *

The Cardiff Porphyria Service provides a clinical service for acute and cutaneous porphyrias. The Clinical Biochemistry Department provides a comprehensive biochemical diagnostic testing and advisory service that includes specialist genetic diagnostic testing.

Department of Medical Biochemistry & Immunology
University Hospital of Wales
Heath Park
CF14 4XW

Dr Mike Badminton MB,ChB, PhD, MRCPath,
Tel: (Sec) 029 207 42809
Fax: 029 207 48383
Email: Mike.Badminton@wales.nhs.uk

The Welsh Medicines Information centre, based at University Hospital Wales provides information relating to porphyria including the Porphyria SAFE Drugs list and telephone advisory service. The Cardiff Porphyria service available at www.cardiff-porphyria.org has more information on the services available.

Kings College and Guy's and St Thomas's Hospitals *

Clinical services for acute and cutaneous porphyrias are based at King’s College Hospital and St Thomas’s Hospital. The Clinical Biochemistry Department, King’s College Hospital provides a comprehensive biochemical diagnostic testing and advisory service.

Dr Robert Sarkany
Consultant Dermatologist and Head of Photobiology
St John’s Institute of Dermatology
Counting House, 1st floor
Guy’s Hospital
Great Maze Road
London SE1 9RT

Email: Robert.Sarkany@gstt.nhs.uk
Tel: (Sec) 020 7188 6389

Dr Joanne Marsden
Department of Clinical Biochemistry
Tel: 020 3299 3856.
joannemarsden1@nhs.net

Photobiology/Dermatology Centre, Salford Royal Hospital *

Clinical service for acute and cutaneous porphyrias based at Salford Royal NHS Foundation Trust, Salford. The Clinical Biochemistry Department, Salford Royal NHS Foundation Trust provides a comprehensive biochemical diagnostic testing and advisory service.

Prof. Lesley Rhodes
Professor of Experimental Dermatology
Director of the Photobiology Unit
Salford Hospital
Stott Lane
M6 8HD
Tel: (+44) 161 206 1150/1128

St James' University Hospital, Leeds *

Clinical service for acute and cutaneous porphyrias. The Clinical Biochemistry Department, United Leeds Teaching Hospitals provides a comprehensive biochemical diagnostic testing and advisory service.

Dr Julian Barth
Old Medical School
Leeds General Infirmary
Leeds,  LS1 3EX
Email: julian.barth@leedsth.nhs.uk
Telephone: 0113 39 23416 / 0113 20 64852

Dr Mick Henderson: Consultant Biochemist or Mr Tim Degg: Senior Biomedical Scientist
Pathology Services,  Leeds Teaching Hospitals NHS Trust
Old Medical School
Leeds General Infirmary
Leeds,  LS1 3EX
Telephone: 0113 20 66861 / 0113 20 66063

Dundee Photobiology Unit

Clinical services for the cutaneous porphyrias are provided by the Dundee Photobiology Unit, Scotland.

Dr Robert Dawe
Photobiology Unit, University Department of Dermatology
Ninewells Hospital & Medical School
Dundee
Email: r.s.dawe@dundee.ac.uk

Dublin

Dublin porphyria services
The Biochemistry Department, St James’s Hospital, Dublin provides a porphyria diagnostic service for the Republic of Ireland

Dr Vivion Crowley
St James’s Hospital
Biochemistry Department
Central Pathology Laboratory
Dublin 8
vcrowley@stjames.ie
Telephone: (+353) 1 416 2935 or (+353) 1 410 3000

*Laboratories with a star are listed on the European Porphyria Initiative (EPI) website www.porphyria-europe.org. EPI has set up a network of specialist porphyria laboratories in which there is collaboration and a quality assurance scheme. These laboratories are able to distinguish, using biochemical testing, between all types of porphyria and are able to offer specialist detailed interpretation of results with clinical advice on management.