United Kingdom (Manchester)

The supra-regional Porphyria Service at Salford Royal NHS Foundation Trust, Greater Manchester, is well established in providing long-term care for both cutaneous and acute hepatic porphyria patients. We provide a diagnostic service through our on-site accredited Porphyria Reference Laboratory and participate in National Acute Porphyria Service (NAPS) outreach clinics. Patients receive genetics counselling through liaison with the Clinical Genetics service at St Mary’s Hospital, Manchester, or their local Genetics service.
There is a strong research facility for erythropoietic protoporphyria (EPP) through the Photobiology Unit (PBU), led by Professor Lesley Rhodes. We are the United Kingdom National Coordinating Centre for the Phase 3 Clinical Trial MT-7117- G01 investigating a new oral agent for the treatment of erythropoietic protoporphyria (EPP) and the MT-7117-A301 extension study. We are also involved in mechanistic research with other photoprotective agents, and in studies of the impact of EPP on patients’ lives.
Professor Rhodes is Clinical Expert in the ongoing approval application of Scenesse® (afamelanotide) for treating EPP patients in the United Kingdom through the National Institute for Health and Care Excellence (NICE).
We are members of the British & Irish Porphyria Network (BIpnet) and have close links with the British Porphyria Association (BPA) patient organization. Dr Liezel Griffin is a corresponding member of the International Porphyria Network (Ipnet) Working Group for the Cutaneous Porphyrias. Professor Rhodes is on the board of the European Society for Photodermatology (ESPD), and advisor to the UK government on effects of non-ionising radiation (including visible light) on health as member of the Committee on Medical Aspects of Radiation in the Environment (COMARE).