The IQWiG is one of the authorities conducting benefit assessments of approved drugs in Germany. In…
The IPPN at the International Conference on Porphyrins and Porphyrias in Sofia, Bulgaria
IPPN @ ICPP 2022 At the beginning of September, the first International Conference on Porphyrins…
Exciting News: Will treatment for children with EPP aged 12 to 17 be available in Europe soon?
On 5 September 2022, Clinuvel Pharmaceuticals submitted a marketing authorisation label extension to the European…
New research strengthens understanding of EPP
A recent study by Granata et al. (2022) on gene expression in blood cells from…
Afamelanotide in England: Appeal outcomes not addressed for more than three years
The possibility to appeal against a negative funding recommendation for technologies evaluated by the National…
Afamelanotide: Good News from Germany!
Afamelanotide (Scenesse ®) will continue to be available for the treatment of adult patients with…
New causative treatment option for erythropoietic porphyrias to be trialed
Protoporphyrin is the phototoxic and hepatotoxic substance accumulating in erythropoietic protoporphyria (EPP). It is built…
The TGA approves afamelanotide for EPP!
After the EMA in 2014 and the FDA in 2019, today the Therapeutic Goods Administration…
New clinical endpoint for the measurement of treatment effectiveness in EPP
Since the first clinical trials measuring treatment effects of afamelanotide in EPP, patients have consistently…
Pandemic isolation and EPP – A commentary
During the pandemic crisis, the value of a normal life, and the pain of losing…