Part Two – “People don’t believe what they can’t see”

This is the second webcast in a series featuring Mikey, an Australian man with Erythropoietic Protoporphyria (EPP) . View part one of Mikey’s EPP video series here The intolerable pain experienced by exposure to light in Erythropoietic Protoporphyria (EPP) patients is mostly invisible and EPP is poorly understood as a result. Try to imagine “having […]

 
Vitiligo and Stem Cells: Narrowband UVB Phototherapy

Narrowband ultraviolet B (NB-UVB) phototherapy is currently seen as the phototherapy of choice for nonsegmental vitiligo patients. Vitiligo is an acquired depigmentation disorder that is characterised by a chronic and progressive loss of functioning skin and/or hair follicle melanocytes. Melanocytes are found in the epidermal layer of our skin and produce melanin, the pigment that […]

 
Part one – “Absolute intolerance to light”

View part two of Mikey’s EPP video series here This is the first webcast in a series featuring Mikey, an Australian man with Erythropoietic Protoporphyria (EPP). When his skin is exposed to light it causes unbearable burning pain. Mikey describes the intense pain of EPP as “feeling like your skin is burning off”. EPP is […]

 
“Ein Leben im Schatten”

“Ein Leben im Schatten” Wir realisieren nicht die Bedeutung von Licht in unserem Leben, wir halten Licht für selbstverständlich. Anhaltender brennender Schmerz, Isolation und das Unverständnis von Gleichgestellten hat eine langfristige Auswirkung auf Patienten diagnostiziert mit erythropoetischer Protoporphyrie (EPP). Für Lyndal, 24, hat die Krankheit zu schwerer Depressionen geführt EPP und Sonnenlicht – eine unmögliche […]

 
Vitiligo: a breakthrough therapy

View our video on Narrowband UVB treatment The introduction of SCENESSE® in vitiligo treatment. Vitiligo is an acquired depigmentation disorder that is characterised by a chronic and progressive loss of functioning skin and/or hair follicle melanocytes. Melanocytes are found in the epidermal layer of our skin and produce melanin, the pigment that gives colour to […]

 
Clinuvel CEO discusses positive phase III results

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.

 
A life in the shadow

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 […]

 
“GMP, setting standards around the world”

Non-Executive Director, Jack Wood, discusses his experiences with Good Manufacturing Practise in the pharmaceutical industry. 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®

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“

”žDie Angst vor dem was da noch kommen mag“ Kinder mit der Krankheit erythropoietische Protoporphyrie (EPP)  grosszuziehen, ist eine traumatisierende Erfahrung, zu der nur wenige Eltern fähig sind. Der soziale Druck und der Stress für alle Beteiligten, ist nicht betroffenen Personen nur schwer nahezubringen, vom Verständnis für diese komplizierte Familiensituation ganz zu schweigen. Das Einwirken […]

 
”žMan distanziert sich sozusagen vom Schmerz“

Adrian was diagnosed at the age of 5 with the genetic disease erythropoietic protoporphyria (EPP), which is characterized by exposure to visible light causing agonizing pain. Bei dieser Krankheit kommt es durch einen genetischen Defekt zu einer Anreicherung toxischer Stoffwechselkomponenten im Körper der Betroffenen. Wird die Haut dieser EPP-Patienten einer Lichtquelle ausgesetzt, vor allem Licht […]

 
What is skin? The layers of human skin

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 […]

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

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.

 
“A fantastic outcome for Clinuvel”

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. […]

 
“The fear of what lay ahead”

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 […]