Friday, May 27, 2016

SCENESSE® treatment in Europe

SCENESSE® treatment in Europe
German Porphyria Expert Centres to start distribution of SCENESSE® (afamelanotide 16mg) Clinuvel Pharmaceuticals Limited (ASX: CUV; XETRA-DAX: UR9; ADR: CLVLY) today announced an update on the company's post-authorisation distribution of SCENESSE® (afamelanotide 16mg) across Europe for adult patients with the rare disorder erythropoietic protoporphyria (EPP).1 SCENESSE® in EPP SCENESSE® is the first approved treatment for EPP, a genetic disorder characterised by acute phototoxic reactions (anaphylactoid reactions and burns) and forced withdrawal from exposure to all forms of visible light. Clinuvel conducted clinical trials of SCENESSE® in EPP from 2006 to 2013.

You may view the full Clinuvel announcement, along with others, at this address:

The APF would like to take this opportunity to remind you how important it is to continue our fight for this revolutionary drug to be approved in the USA. 
PLEASE keep sending us your photos and stories.  We will not stop submitting your stories to the FDA.  Thank you for all you've done already!

"Remember....Research is the key to your cure!"

No comments:

Post a Comment

Bright Ideas for Shadow Jumpers EPP

Bright Ideas! This is a place for kids to learn from others with EPP, to share their own tips and tricks on things like what to wear...