Cardiff is one of two centres designated by the Advisory Group for National Specialised Services (AGNSS) to provide a national service for patients with active acute porphyria (acute intermittent porphyria, variegate porphyria, hereditary coproporphyria).
The other centre is at King’s College in London.
We also work in partnership with 2 Regional Porphyria Centres in Salford (Prof Felicity Stewart) and Leeds (Dr Kevin Stuart).
The service is funded for:
The service provides clinical advice and support to healthcare professionals within the patients own hospital through a shared care arrangement. This is followed-up by support through outpatient services in Cardiff or at one of the outreach clinics (see below).
NAPS provides clinical advice and support as well as authorisation and provision of haem arginate treatment 24 hours a day, seven days per week. The out of hours service is provided in rotation from one of the two centres and can be contacted through the University Hospital of Wales switchboard: 029 2184 7747.
Patients are followed-up in outpatient clinics held three times/month at the University Hospital of Wales.
Patients can also be seen at either:
a) Salford Royal NHS Foundation Trust, Stott Lane, Salford. (joint clinic with Professor Felicity Stewart, Consultant in Clinical Biochemistry), or
b) Queen Elizabeth Hospital, Edgbaston, Birmingham (joint clinic with Professor Phillip Newsome, Consultant Hepatologist.)
Provides advice on drug safety in acute porphyria.
A copy of the Cardiff safe drug list is available via their website.
Contact is by telephone: 029 2184 3877 or fax: 029 2184 3879.
Dr Danja Schulenburg-Brand, Consultant in Medical Biochemistry and Metabolic Medicine (Clinical Lead)
Ms Mabs Obasi , Clinical Nurse Specialist
During office hours clinical staff can be contacted on 02921 846588
The other centre is at King's College in London and has 2 consultants, Dr Penny Stein and Professor David Rees.
For general enquiries contact their porphyria secretary on 0202 299 4181 or the porphyria nurses on 0203 299 5776 or email : firstname.lastname@example.org
For clinical advice during office hours contact their Red Cell Haematology registrar via switchboard: 0203 2999000
We are actively involved with the European Porphyria Network project which has patient information on all the porphyrias in a variety of mainly European languages which are available on their website .