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…)
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 
As part of our ongoing focus on erythropoietic protoporphyria (EPP), we’ve invited Victoria to share her experiences with EPP as a guest blogger. You can read Victoria’s first post 
May is Skin Cancer Awareness Month in the US, and it’s likely that the associated awareness campaign has come not a moment too soon. A recent study confirmed that non-melanoma skin cancer has reached epidemic levels in the US, with an estimated 300 percent increase in the number of skin cancers over the past decade and a half.
