A recently published analysis of a long-term observational study by the Porphyria Center Rotterdam in…
Blog
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…
The FDA approves givosiran for AHP!
These are exciting times for the porphyria patient community: After the recent FDA approval of…
MT-7117 ENDEAVOR Study for EPP
Today, in a press release Mitsubishi Tanabe Pharma Corporation announced results of the MT-7117 ENDEAVOR…
The FDA approves afamelanotide for EPP!
The IPPN is delighted by today‘s FDA approval of afamelanotide, a significant milestone in a…
Access to Medicines and Medical Devices All-Party Parliamentary Group (APPG) report on NICE methods
The UK Access to Medicines and Medical Devices All-Party Parliamentary Group (APPG) has published a…
Three hours of sun: New studies on EPP treatment under real world conditions!
Only a few minutes in the sun are usually enough for EPP patients to develop…
Patient Empowerment, Medicine Access @ Point of Care, Jasmin Barman-Aksözen
Patient representation during the evaluation of medicines by key decision makers such as regulatory agencies,…