Afamelanotide (Scenesse ®) will continue to be available for the treatment of adult patients with…
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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…
Important step towards a new causative treatment option for EPP
Treatment of the underlying cause of erythropoietic protoporphyria (EPP) made a big leap forward, as…
EPP patients spend an additional 6 hours per week outdoors when treated with afamelanotide
A recently published analysis of a long-term observational study by the Porphyria Center Rotterdam in…
Overexposed – Documentary about EPP
Despite the difficult, coronavirus-related situation, we hope that you and your loved ones are well.…
The EMA recommends givosiran for AHP!
Following last November’s FDA approval, the European Medicines Agency (EMA) has recommended givosiran (Givlaari) for…
The Patient Perspective: A Matter of Minutes
The Patient, the scientific journal dedicated to patient-centered outcomes research, has published a commentary authored…