1. On 31 January 2012 Swiss TV channel Telezueri aired a report on erythropoietic protoporphyria (EPP), a rare genetic disorder which causes absolute intolerance of skin to sunlight, and Clinuvel’s novel drug SCENESSE® (afamelanotide), which has been trialled as a photoprotective in EPP. Clinuvel has subtitled the 'Check up' program and re-released for the broader EPP community.

    All footage and soundtrack are copyright © Telezueri 2012.

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  2. Following Clinuvel's landmark filing of a marketing authorisation application for the drug SCENESSE® (afamelanotide) with the European Medicines Agency, CEO Dr Philippe Wolgen discusses the challenges to date and what may lie ahead for Clinuvel.

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  3. Have you ever wondered why you have been sunburnt on a cloudy day? Harmful ultraviolet (UV) rays can still penetrate the earth's atmosphere. To help understand why you can still get burnt in these (and other) situations, we've produced a short video on why UV levels vary. Produced by Clinuvel clinuvel.com

    The total dose of UV radiation reaching the earth's surface, and hence the potential damage to human skin and tissues, varies, depending on many factors.

    The sun's elevation in the sky depends on the time of the day and year. The shorter the distance that photons of UV radiation need to travel though the earth's atmosphere, the greater the intensity of UV on earth. The altitude of a location also effects UV radiation levels, as the higher a location is above sea level, the shorter the distance UV radiation needs to travel to reach the land.

    The thinning of the ozone layer located above Antarctica has had a considerable impact on the ability of the atmosphere to absorb UVB: a significant contributor to the increased incidence of skin cancer and other damage to human tissues which has been observed in populations bordering the ozone hole.

    Clouds act on UV, primarily, by scattering radiation. This effect can either reduce or enhance UV radiation levels, depending on the type of cloud cover. Some clouds absorb infrared radiation and as a result of the diminished heat sensation, people are given a false sense of security. They often change their behaviour on cloudy days, unaware that they are exposing themselves to this potential danger.

    UV radiation is also reflected from surfaces such as sand, snow and water. These surfaces can increase the UV radiation at ground level and increase the amount of skin damage incurred from UV radiation exposure.

    When all these factors are considered, it is important to recognise that the net potential UV risk is a result of these associated variables and will depend on an individual's circumstances. The only sure way to significantly reduce the risk of skin damage is with vigilant protection from UV radiation and light, known as photoprotection.

    Join our Photoprotection network on facebook and let us know what videos you want to see facebook.com/group.php?gid=193199520658#!/group.php?gid=193199520658&v=wall

    Visit our website for more information on skin, light and UV clinuvel.com/en/science-of-skin

    Image and video credits:
    ESA/Hubble (M. Kornmesser & L. L. Christensen)
    Ozone layer video courtesy of NASA
    NASA Goddard Space Flight Center

    Article References:
    Skin cancer and ultraviolet-B radiation under the Antarctic ozone hole: southern Chile, 1987--2000, Jaime F. Abarca, Casiccia - 2002
    Global solar UV index: A practical guide, World Health Organization - 2002
    Sources and measurement of ultraviolet radiation, Diffey - 2002

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  4. Adrian was diagnosed with the genetic disease Erythropoietic Protoporphyria (EPP) when he was 5. Exposure to light causes him excruciating pain. He has absolute light intolerance.

    EPP is characterised by the accumulation of toxic compounds in the body of patients. Exposing an EPP patients skin to light, particularly blue light, causes excruciating pain, an intense burning, stinging heat. Adrian describes EPP as similar to having badly sunburnt skin scrubbed with a wire brush. Swelling and blistering can also form after extended sun exposure. Even artificial lights, such as those in supermarkets and laptop screens can cause acute pain.

    EPP is a lifelong disorder presenting in early childhood. The onset of the disease is traumatic for both children and parents.

    Sun avoidance is the mainstay of treatment for EPP patients who are often forced to remain indoors, severely affecting their quality of life. Eventually a nocturnal existence is the only way of life for many porphyria patients.

    Currently, there is no proven effective treatment or prevention method for EPP.

    View this video with German subtitles:

    View this video with Hebrew subtitles:

    For more information on EPP visit:

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  5. 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.

    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. 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, an existence in the shadow.

    The acute phototoxic reactions experienced in EPP can be invisible; those with EPP are often misunderstood or labelled as hypochondriacs when they explain their condition, even by close family or friends. The disease is misunderstood and causes social isolation and severe invisible pain which greatly impacts upon the quality of life of those living with EPP.

    Learn more about EPP: clinuvel.com/en/erythropoietic-protoporphyria

    Lyndal is the daughter of Ralph and Wendy, who have shared their story on raising two daughters with EPP here vimeo.com/9340729

    For help or information visit beyondblue.org.au, call Suicide Helpline Victoria on 1300 651 251, or Lifeline on 131 114. Teenagers experiencing personal problems can call Kids Help Line on 1800 55 1800. Victorian Suicide HelpLine on 1300 651 251; Lifeline on 13 11 14; SANE Helpline on 1800 187 263 or visit kidshelpline.com.au, headspace.org.au, suicideline.org.au

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Erythropoietic Protoporphyria


A rare and severe skin disorder, Erythropoietic protoporphyria (EPP), means intolerable burning pain following light/UV exposure.

Unrelenting pain from sun exposure greatly impacts the quality of life of EPP patients. With no effective treatment currently…

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A rare and severe skin disorder, Erythropoietic protoporphyria (EPP), means intolerable burning pain following light/UV exposure.

Unrelenting pain from sun exposure greatly impacts the quality of life of EPP patients. With no effective treatment currently available to them, sun avoidance is their only option. Forced to remain indoors, EPP patients eventually succumb to a nocturnal existence, the only way of life for many porphyria patients.


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