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A life in the shadow

13 Jul 2010
Continuing and persistent burning pain, isolation and a lack of understanding from peers has a long term impact on patients diagnosed with erythropoietic protoporphyria (EPP).  For Lyndal, 24, the disease has led to severe depression. We don’t realise the importance of light in our life, we take light for granted. EPP and sunlight - an impossible task EPP can be defined as absolute light intolerance. Exposure of Lyndal’s skin to sunlight results in severe burning pain, swelling and scarring caused by a phototoxic reaction in Lyndal’s skin. Throughout her life, Lyndal has endured countless painful reactions to sunlight. With no effective treatment available for EPP, the only option is to avoid sunlight, a next to impossible task. The result is a life led in social isolation, sitting on the sidelines,…

Clinuvel CEO discusses positive phase III results

13 Jul 2010
Dr Philippe Wolgen, CLINUVEL's CEO, discusses the results of the company’s Phase III study of SCENESSE® in erythropoietic protoporphyria (CUV017) This audio file is available for download in mp3 format. Right click here and select "Save target as" to save this file to your computer.

"GMP, setting standards around the world"

12 Jul 2010
Non-Executive Director, Jack Wood, discusses his experiences with Good Manufacturing Practise in the pharmaceutical industry. For more on GMP, visit our blog for the our latest article What makes a ‘gold standard’ in cGMP? This audio file is available for download in mp3 format. Right click here and select "Save target as" to save this file to your computer.

CLINUVEL's manufacturing partner for SCENESSE®

08 Jul 2010
CLINUVEL Non-Executive Director Jack Wood discusses the selection of SurModics Inc as CLINUVEL’s first commercial manufacturing partner for SCENESSE® This audio file is available for download in mp3 format. Right click here and select "Save target as" to save this file to your computer.

”žDie Angst vor dem was da noch kommen mag“

06 Jul 2010
     ”žDie Angst vor dem was da noch kommen mag“

”žMan distanziert sich sozusagen vom Schmerz“

06 Jul 2010
     ”žMan distanziert sich sozusagen vom Schmerz“

What is my skin type? (the six Fitzpatrick skin types)

09 Jun 2010
Our skin protects us from damage incurred from exposure to UV light. Melanin, the pigment that colours our skin, acts as a light filter, reflecting and refracting ultraviolet light. Eumelanin increases our ability to prevent skin damage from UV light. Skin has been classified into 6 different skin types. For more information on skin, light, UV and melanin visit our Science of Skin website.

What is skin? The layers of human skin

08 Jun 2010
The skin is the largest organ of the human body, weighing approximately 16% of our bodyweight. Skin consists of multiple layers, epidermis, dermis and hypodermis. Human skin has numerous functions, it is the major interface between the environment and the human organs and so it serves many specialised functions that facilitate survival. It regulates body temperature to protect against hyperthermia and hypothermia. Skin protects from the invasion of noxious substances, UV light, heat and micro-organisms. The skin is also the most extensive sensory organ of the body for detection of tactile, thermal and painful stimuli for the start of vitamin D production. For more information on skin, light, UV and melanin visit our Science of Skin website. Download CLINUVEL's "What is Skin" supporting PDF

"A fantastic outcome for Clinuvel”

12 Apr 2010
On Monday 17th May, 2010, CLINUVEL announced that the Italian Medicines Agency (AIFA) had listed CLINUVEL’s proprietary drug, Scenesse, as a treatment available for prescription and reimbursement for erythropoietic protoporphyria (EPP) under Law 648/96 in Italy. Read the announcement here. The following day, CLINUVEL announced its approved trade name and brand for the drug; Scenesse. Read the announcement here. Drawing on his experience within the international pharmaceutical and life sciences industries, Dr Roger Aston was asked for his views on these two announcements. This audio file is available for download in mp3 format. Right click here and select "Save target as" to save this file to your computer.

"The fear of what lay ahead"

21 Mar 2010
Raising children with Erythropoietic Protoporphyria (EPP) is a traumatising experience, one which few parents are able to express or understand. In EPP, exposure of skin to light, particularly light in the blue spectrum (400 nanometers wavelengths and beyond), causes deep burning, intense pain and scarring skin reactions. Parents helplessly witness the anguish of their children growing up in isolation. Ralph and Wendy have raised two daughters with EPP. Their eldest daughter Angela experienced symptoms from birth but was not diagnosed until she was three years old. Without understanding the direct cause of her distress and without correct diagnosis, Ralph and Wendy witnessed their daughter's distress for years. As one of the most severe photodermatoses, EPP is generally misunderstood; a genetic disorder where severity of skin symptoms (phototoxicity) are not well…
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