We provide one of the largest porphyria services in the UK. We provide testing for adults and children with all forms of porphyria, however the service we offer has a particular focus on the acute porphyrias (acute intermittent porphyria, variegate porphyria and hereditary coproporphyria).
We are one of two providers of the National Acute Porphyria Service (NAPS), a highly specialised service developed to support patients who are severely affected by acute porphyria. We work closely with our partners in Cardiff and Vale University Health Board providing immediate support for all patients who have an acute attack of porphyria in England, Scotland or Wales. The service also enables rapid advice to be given to clinicians looking after people with acute symptoms. NAPS also provides specialist advice on the management of recurrent attacks. We arrange specialist follow up outpatient clinics at either a national porphyria centre or one of our outreach centres. Patients with confirmed porphyria are offered long-term follow up and this includes monitoring for complications such as kidney or liver problems.
NAPS supplies haem arginate to hospitals across the UK for patients having acute attacks plus it overseas the homecare service for patients having prophylactic haem arginate at home.