Centres of expertise

UK porphyria centres are located in key areas around the country. The main centres of expertise are based in London, Cardiff and Salford. All 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 continues to commission support for Scottish acute porphyria patients and their doctors from the English NAPS service. These arrangements came into operation as of 1 April 2016.

There is a formal shared care arrangement between NAPS doctors (mainly from Cardiff) and the Scottish Inherited Metabolic Disorders Service (Dr Eve Miller-Hodges (East) or Dr Peter Galloway (West). Outreach clinics will be held once every six months in either Edinburgh or Glasgow, and have continued virtually throughout the COVID pandemic. 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 of 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 diagnostic testing and haem arginate treatment for patients in Scotland.

The aim is that new patients will be seen within six weeks initially, although this may take the form of a virtual appointment or telephone consultation to establish what support is needed. Patients will then be offered an appointment for one of the scheduled outreach clinics.

NAPS contact details: this is 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.

Scottish Inherited Metabolic Disorders Service (SIMDS) contact details (referrals are only accepted from another clinician, e.g. GP or other specialist):

  • Dr Eve Miller-Hodges: Metabolic Unit, Anne Ferguson Building, Western General Hospital, Edinburgh, EH4 2XU

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 Danja Schulenberg-Brand
Email: Caroline.Taylor5@wales.nhs.uk
Secretary (Caroline): 029 2074 6588

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 9RS
Tel: 07890 252396
p.stein@nhs.net

Sunita Sardiwal (PhD) | Viapath
Principal Clinical Scientist/HSST
Porphyrin Section
Department of Clinical Biochemistry
Kings College Hospital, London SE5 9RS
020 3299 3856
s.sardiwal@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.

Dr Denise Darby

Consultant in Clinical Biochemistry & Metabolic Medicine
Department of Clinical Biochemistry
Salford Hospital
Stott Lane
M6 8HD
denise.darby@nhs.net
Tel: 0161 206 8015

Glasgow and Edinburgh

NAPS in Scotland: NHS Scotland continues to commission support for Scottish acute porphyria patients and their doctors from the English NAPS service. These arrangements came into operation as of 1 April 2016. All patients with active porphyria will be seen at NAPS Outreach Clinics, held every 6 months in Edinburgh.

For acute admissions and new / suspected patients: please contact the National Acute Porphyria Service via the University Hospital of Wales: 02920 747 747.

For out-patient follow-up of known / previously diagnosed patients: clinicians can refer in writing to the Scottish Inherited Metabolic Disorders Service:

West of Scotland

Dr Alison Cozens
Clinical Lead, Scottish IMD Service
Royal Hospital for Sick Children
1345 Govan Road
Glasgow, G51 4TF

East of Scotland

Dr Eve Miller-Hodges
Scottish IMD Service
Metabolic Unit, Anne Ferguson Building
Western General Hospital
Crewe Road South
Edinburgh
EH4 2XU

GPs need to send a paper referral letter to Eve Miller-Hodges (there is no eReferral system):

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 Danja Schulenburg-Brand
Email: Caroline.Taylor5@wales.nhs.uk
Secretary (Caroline): 029 2074 6588

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

Sunita Sardiwal (PhD) | Viapath
Principal Clinical Scientist/HSST
Porphyrin Section
Department of Clinical Biochemistry
Kings College Hospital, London SE5 9RS
020 3299 3856
s.sardiwal@nhs.net

Photobiology/Dermatology Centre, Salford Royal Hospital *

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

Dr Liezel Griffin
Consultant Dermatologist and Honorary Clinical Lecturer
Salford Royal Hospital (Northern Care Alliance NHS Foundation Trust)
The Dermatology Centre (Irving Building)
Stott Lane
M6 8HD
Liezel.Griffin@nca.nhs.uk
Secretary at SRFT: Rachel Tang
Tel: 0161 206 8015

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

Dundee Photobiology Unit

The Scottish Cutaneous Porphyria Service is located within:
The Photobiology Unit
Dermatology
Level 8
Ninewells Hospital & Medical School
Dundee
DD1 9SY

For clinical referral of patients, interpretation of results or management of cases:

For advice on laboratory testing of samples or to request urgent processing of samples you can also contact the laboratory directly:

Telephone:  01382 740074 extension 34409 or 01382 632239

The laboratory opening hours are:  Monday to Friday 8.30am – 4.30pm excluding public holidays

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.