International Porphyria Patient Network International Porphyria Patient Network
  • Home
  • About us
  • Blog
  • Links and files
  • Gallery

English

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…

20/05/2022
Editorial Team 2022-05-20T20:14:40+02:00
English

Afamelanotide: Good News from Germany!

Afamelanotide (Scenesse ®) will continue to be available for the treatment of adult patients with…

01/02/2022
Editorial Team 2022-02-01T20:25:55+01:00
English

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…

20/07/2021
Editorial Team 2021-07-20T22:07:41+02:00
English

The TGA approves afamelanotide for EPP!

After the EMA in 2014 and the FDA in 2019, today the Therapeutic Goods Administration…

27/10/2020
Editorial Team 2020-10-27T23:35:19+01:00
English

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…

28/08/2020
Editorial Team 2020-08-28T20:55:03+02:00
English

Pandemic isolation and EPP – A commentary

During the pandemic crisis, the value of a normal life, and the pain of losing…

05/05/2020
Editorial Team 2020-05-05T13:53:28+02:00
English

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…

03/05/2020
Editorial Team 2020-05-03T16:40:39+02:00
English

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…

03/05/2020
Editorial Team 2020-05-03T16:36:15+02:00
English

Overexposed – Documentary about EPP

Despite the difficult, coronavirus-related situation, we hope that you and your loved ones are well.…

12/04/2020
Editorial Team 2020-04-12T16:27:04+02:00
English

The EMA recommends givosiran for AHP!

Following last November’s FDA approval, the European Medicines Agency (EMA) has recommended givosiran (Givlaari) for…

03/02/2020
Editorial Team 2020-02-03T13:23:20+01:00

Posts navigation

1 2 Next Page

International Porphyria Patient Network

  • Home
  • About us
  • Blog
  • Links and files
  • Gallery

You can toggle right click protection within Theme Options and customize this message as well.

You can also add shortcodes here.