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,…