UK centres of expertise

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.

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.

For non-urgent referrals, please see the following list for British and Irish porphyria specialists. *** Unless urgent, always ask your doctor for a referral ***

 

British porphyria specialists

University Hospital of Wales, Cardiff*
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 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.

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

St James’s 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 Royal Infirmary (Glasgow)
Dr Peter Galloway
Macewen Building
Glasgow Royal Infirmary
Glasgow
G4 0SF
Email: peter.galloway@ggc.scot.nhs.uk
Telephone: 0141-211 4636

 

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
Email: alison.cozens@nhs.net

Irish porphyria specialists

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

 

Cutaneous care (such as EPP and PCT)

Most of the above listed specialists provide advice for people with cutaneous porphyria as well as acute, as can be seen in the brief description of the centre/lab. Additionally, please also see the following specific cutaneous specialists:

London
Dr R Sarkany
Photobiology Unit,  St John’s Institute of Dermatology
Block 7, St. Thomas’s Hospital
Lambeth Palace Road
London, SE1 7EH
Tel: (Sec) 020 7188 6389

 

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

 

Click here for international porphyria specialists.

*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.

 

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