Allergic to the sun?

Monday, February 21st, 2011

As the Northern Hemisphere approaches the end of winter, we are beginning to see more mentions of ‘sun allergies’ in popular press, online and in social media.

Most people are not actually ‘allergic’ to the sun, but rather are suffering the first symptoms of seasonal or light-induced skin disorders, known medically as photodermatoses. Photodermatoses cause a person’s skin to react to even the briefest sunlight exposure by burning, swelling or developing a rash. Most distressingly, these diseases can have sudden onset where people, who may have never experienced them before, see symptoms following their first day in the spring sun. (more…)

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…)

A clinical success: study retention rates

Thursday, February 10th, 2011

We were delighted this week to be able to announce the successful completion of our first Phase II study conducted in the US, a placebo controlled, randomised trial of SCENESSE® (afamelanotide) for patients diagnosed with erythropoietic protoporphyria (EPP) (CUV030). (more…)

Childhood reactions and two decades to diagnose

Friday, February 4th, 2011

As part of our ongoing focus on erythropoietic protoporphyria (EPP), we’ve invited Victoria to share her experiences with EPP on the blog.

My name is Victoria; I am 26 years old and live in England. I was diagnosed with EPP at the age of 24. I fought for many years to get people to listen to me and understand EPP. I want to help raise awareness for this condition and also encourage those who suffer in silence to fight to get someone to listen to them. This is part of my story. (more…)

Mikey’s story part two – EPP

Monday, January 17th, 2011

Today Clinuvel released the second instalment of our video series featuring Mikey, a 44 year old Australian man who has the severe light intolerance disorder, Erythropoietic Protoporphyria (EPP). You can view the new video on our website or on YouTube.

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Compassionate use – navigating the regulatory landscape to ‘do good’

Friday, December 3rd, 2010

As snow begins to fall around Clinuvel’s European office, the team in Australia is preparing for a long hot summer. The seasons are at the forefront of our minds at Clinuvel, since our lead drug SCENESSE® appears to have a dramatic impact on the ability of patients to expose themselves to sun. We try to test the drug under the most extreme conditions, meaning trials must be conducted in spring and summer. As the seasons change, we begin to see more requests and enquiries from the southern hemisphere, in particular from patients with erythropoietic protoporphyria (EPP), seeking access to the drug outside of formal trial programs. (more…)

The effects of photosensitivity disorders on patient quality of life

Friday, October 22nd, 2010

A new study from the University of Manchester has uncovered some of the impacts that photosensitivity disorders have upon individual and family quality of life. While several research papers have illustrated the trend towards reduced psychological health in this group, this is the first to compare specific aspects of lifestyle in photosensitive and healthy individuals. (more…)

Mikey’s story – EPP

Tuesday, September 7th, 2010

Today Clinuvel presents the first in a series of webcast videos featuring 44 year-old Mikey, an Australian man with the severe light intolerance disorder Erythropoietic Protoporphyria (EPP).

EPP is a rare, inherited, metabolic disorder characterised by extreme phototoxicity; toxic reactions to UV and visible light, particularly blue light. The symptoms of this photosensitivity may include those which are not visible to the naked eye, including itching, burning, prickling and most notably, intense pain. (more…)

Summary of today’s announcements

Wednesday, July 14th, 2010

Today’s announcement of the results of CUV017 has brought with it a stream of updates from Clinuvel, on the website, YouTube and beyond.

In this post we summarise the days releases and developments.

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Shadow-jumping: EPP and work

Wednesday, April 21st, 2010


This week is Porphyria Awareness Week in the US, and guest blogger Mikey is discussing his experience of the impact that his EPP has had on his professional life.

Direct and indirect sunlight, from reflected light, is a real “killer” for me. If I can find a shadow, I can put exposed skin into that shadow to prevent that area getting burnt.

Unless you’ve got EPP you wouldn’t understand.

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