1. Background EPP

Video: Living with EPP, Dr. Cornelia Dechant (2018)

Video: Leben mit EPP, von Dr. Cornelia Dechant (2018)

Documentary by Andrea Minoglio: Overexposed (2019)

2. The story behind afamelanotide

Video: Dr. Rocco Falchetto shares the fascinating story behind afamelanotide for the treatment of erythropoietic protoporphyria (Symposium on rare diseases and orphan drugs – Improving patient access to rare disease medicines, Basel, Switzerland, May 2019)

Video: Dr. Rocco Falchetto teilt die faszinierende Geschichte hinter Afamelanotide zur Behandlung der erythropoietischen Protoporphyrie (Trendtage Gesundheit, Luzern, Schweiz, März 2019)

Two articles on the presentation and panel discussion with Dr. Rocco Falchetto and Dr. Jasmin Barman-Aksözen at the DIA Europe 2019 Conference (Vienna, Austria, February 2019)

DIA Europe: Patients Get Their Say. Now for the Doctors? Julian Upton (February 2019)

Patient Preferences – the science of tomorrow. (April 2019)

3. Approval

Press release European Medicines Agency (EMA)
Scenesse recommended for rare disease that causes intolerance to sunlight. Patients involved in discussions on benefits and risks of a medicine at CHMP for the first time (London, 24. October 2014). Dr. Jasmin Barman-Aksözen was one of the patients at that meeting: Scenesse recommended for rare disease that causes intolerance to sunlight

FDA News Release – The U.S. Food and Drug Administration today granted approval to Scenesse (afamelanotide) to increase pain-free light exposure in adult patients with a history of phototoxic reactions (damage to skin) from erythropoietic protoporphyria (White Oak, MD, 8 October 2019): FDA approves first treatment to increase pain-free light exposure in patients with a rare disorder

4. Health Technology Assessment

Video: Dr. Jasmin Barman-Aksözen shares insights on Health Technology Assessment of afamelanotide in Germany (Global Skin, Geneva, September 2017)

IPPN as stakeholder at NICE

5. The power of Patient-Scientists:

For Rocco Falchetto, stepping into the sun was extremely painful. Then one day, everything changed. eyeforpharma (October 2018): The Discovery That Changed My Life

Point of View, Medicine Access @ Point of Care, Dr. Jasmin Barman-Aksözen (August 2019): Patient empowerment and access to medicines: Insights from a scientist-patient suffering from erythropoietic protoporphyria

Articolo in AboutPharma Online con la partecipazione della Dr. Francesca Granata, in occasione dell’International Porphyria Patient Day e dell’International Congress on Porphyrins & Porphyrias, Milano (Settembre 2019): Nuove armi contro le porfirie

Dr. Rocco Falchetto speaking about the IPPN at the International Porphyria Patient Day in Milan (September 2019) – Video: What is the IPPN?

Dr. Francesca Granata in un articolo della rivista di salute e benessere Profilo Salute (Settembre 2019): Il  calvario di Francesca

The Patient – Patient-Centered Outcomes Research, Dr. Rocco Falchetto (November 2019): The Patient Perspective: A Matter of Minutes

Un aggiornamento dall’Osservatorio Malattie Rare su givosiran, il farmaco per le porfirie acute, da parte dell’associazione Porfir.I.A.DomenicoTiso e l’IPPN (Dicembre 2019): Porfiria epatica acuta, givosiran approvato negli Stati Uniti

Un articolo dell’Osservatorio Malattie Rare sul congresso ICPP, con intervista alla Dott.essa Francesca Granata (Dicembre 2019): Porfiria, si è tenuto a Milano il più importante congresso internazionale

Un articolo sul Corriere della Sera scritto dalla Dott.essa Francesca Granata che descrive il suo percorso di paziente, ricercatrice e patient advocate (Gennaio 2020): Malattia come opportunità

6. Patient Advocacy

Video EPP campaign in Germany by Linda Richter (2017): EPP Video English

Video EPP Kampagne in Deutschland, Linda Richter (2017): EPP Video Deutsch

Poster on EPP for the general public – Painful light intolerance since childhood? Think erythropoietic protoporphyria! Illustrations by Dr. Jasmin Barman-Aksözen: Poster_Painful_Light_Intolerance

Poster zu akuten Porphyrien für die Allgemeinheit – Massive Bauchschmerzen ohne Ursache? Schon an akute Porphyrie gedacht? Illustrations by Dr. Jasmin Barman-Aksözen: Poster_Massive_Bauchschmerzen_akute_Porphyrie

Poster on acute porphyrias for the general public – Abdominal pain “without a good reason”? Think acute hepatic porphyria! Illustrations by Dr. Jasmin Barman-Aksözen: Think acute hepatic porphyria!