MAA: a moment in Clinuvel’s EPP story

Thursday, February 9th, 2012

Those who have taken an interest in Clinuvel will have learned with joy that, on Monday February 6th, the company announced its first official filing for SCENESSE® (afamelanotide) with the European Medicines Agency. It has taken our teams around six years to arrive at this point. Benchmarked against peer companies, it is a relatively swift development path for a first-in-class drug; we first publicly announced our erythropoietic protoporphyria (EPP) program in September 2006. It is an opportune moment to reflect briefly on how we reached this milestone and then discuss the steps that must be taken from here. (more…)

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Clinical relevance – the value of patient experiences

Friday, September 30th, 2011

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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British Skin Foundation scratches the surface

Friday, September 16th, 2011

In a striking new campaign, the British Skin Foundation have teamed up with photographer Rankin to try and visualise the physical and emotional impact that skin diseases can have on individuals.

Launched earlier this week at London’s National Portrait Gallery, the works posted online feature models crawling with bugs, with cracked and dried skin and covered in barbed wire. For many living with skin disorders such sensations can feel all too familiar, although the symptoms aren’t always visible. (more…)

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“Solariums make a mockery of our efforts to reduce skin cancer”: Cancer Council Australia

Monday, May 16th, 2011

Cancer Council Australia has launched one of the strongest public attacks to date on the use and regulation of sunbeds in the country. This follows a report that some solarium devices emit UV radiation six times stronger than the sun at midday in Australia.

In a press release issued today, the CEO of Cancer Council Australia, Professor Ian Olver, cited a paper published in this month’s Photochemistry and Photobiology journal when calling for the Australian Government to phase out solariums. (more…)

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Porphyrias: a disease grouping by cause, not symptoms

Monday, April 18th, 2011

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).

As a result of each of these disruptions, the body presents with unique symptoms ranging from skin symptoms and phototoxicity – as those seen in erythropoietic protoporphyria and congenital erythropoietic porphyria – through to acute attacks of abdominal pain, seen most commonly in acute intermittent porphyria. In short, no two porphyrias are clinically identical yet they are discussed as a single group of disorders with a similar cause. As a matter of fact, there are eight variations of porphyrias, each with a specific clinical manifestation of disease. (more…)

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How does indoor tanning cause skin cancer?

Wednesday, April 6th, 2011

Tanning causes skin cancerEarlier today, new stats were published by Cancer Research UK highlighting that two young adult Britons are diagnosed with skin cancer every day; a rate which has tripled since the 1970s. There were several factors highlighted as contributing to this increase, but one was most clearly singled out in the release:

“using a sunbed before the age of 35 can increase your risk of melanoma by 75%”

(more…)

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‘Measuring’ vitiligo: the challenges of clinical and treatment evaluation

Monday, April 4th, 2011

Since our announcement last year that Clinuvel would commence a new program for SCENESSE® (afamelanotide) in nonsegmental vitiligo, the company has received vast interest in the application of the drug in this disease. Of the enquiries that best captured the essence of this program, one stood out: a US based analyst asked how the company intended to objectively measure the response to treatment, the repigmentation of vitiliginous lesions, in its trial. (more…)

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‘The freak out will happen’ – Lee Thomas’ diagnosis of vitiligo

Tuesday, March 22nd, 2011

As part of our ongoing guest blogger series, we’ve invited Lee Thomas to share his experiences on the Clinuvel blog. Lee is an award winning US journalist who has spoken widely about his experiences with vitiligo, including in a documentary entitled ‘Turning White’. You can learn more about Lee at http://www.leethomas.com/


“What the…?”  “Why me…?”

“Where is that trucking school info…?”

“My career is…”

I couldn’t even finish most sentences. (more…)

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Devices for detecting skin cancer – Part 2

Friday, March 18th, 2011

This is the second in a two-part blog series on devices used to detect skin cancers in humans. The first post, which you can read here, looks at existing tools.

In recent years, several scientific research organisations and companies have begun studying and refining devices designed to detect cancerous lesions on the skin.

Although it is unlikely that these innovative technologies will be a replacement for a dermatologist’s professional judgment, they may significantly aid and hasten the diagnosis process. Four of the latest technologies have caught the media’s attention in recent years. (more…)

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How I explain EPP to the world

Friday, February 18th, 2011

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 here.

When I was first diagnosed with EPP there was a huge sense of relief: someone had actually listened to me and believed that something wasn’t quite right.

That said, I am not overjoyed at having the condition as it restricts my life so much. When Spring starts to approach I get anxious as I dread having a reaction; my freedom to go out feels more restricted. (more…)

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