Since 2006 Clinuvel has trialed SCENESSE® in a truly unique group of individuals: patients living with erythropoietic protoporphyria (EPP), a rare genetic blood disorder which causes an absolute intolerance to light.
EPP prevents patients from leading ‘normal’ lives, especially outdoors. It is one of the few diseases that manifest clinically with initially invisible symptoms which cause severe dermal pain for several days. This not only presents a challenge for diagnosis and treatment, but also for generating meaningful clinical trial results – those which are measurable numerically and are used by regulatory authorities to evaluate the efficacy of a drug in a patient population. Here, real life patient experiences during a trial can play an important role in providing clinical relevance and analysing hard data. (more…)

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Ultraviolet (UV) radiation forms part of the electromagnetic spectrum between visible light and X-rays; it is invisible to the human eye. UV light can be separated into three bands, UVA (400-320nm), UVB (320-290nm) and UVC (290-100nm). Of the UV radiation that reaches the Earth’s surface from the sun, approximately 6% is UVB and 94% UVA.
May is Melanoma/Skin Cancer Detection and Prevention Month in the US, and with summer just around the corner in the northern hemisphere, this is a timely reminder of the dangers of unprotected UV exposure.
Held biennially, the Porphyrins & Porphyrias conference (P&P) is the world’s largest gathering on the porphyrias – a group of metabolic disorders causing biochemical disruptions in the pathway of the body which synthesizes haem (heme).
Following a curious tweet on her ‘sun allergy’ we invited Amanda from Texas to share her experiences as a guest blogger in the hope that they may help others. This is the second of two parts, you can read
We were delighted this week to be able to announce the successful
As part of our ongoing focus on erythropoietic protoporphyria (EPP), we’ve invited Victoria to share her experiences with EPP on the blog.

