Video: Living with EPP, Dr. Cornelia Dechant (2018)[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_video link=”https:\/\/www.youtube.com\/watch?time_continue=4&v=3q-hMIHqMvg” el_width=”50″ css=”.vc_custom_1567623351052{padding-left: 2px !important;}”][vc_column_text css=”.vc_custom_1562674157503{padding-left: 2px !important;}”]\n
Video: Leben mit EPP, von Dr. Cornelia Dechant (2018)[\/vc_column_text][vc_video link=”https:\/\/www.youtube.com\/watch?v=DWAlzCaDnbM” el_width=”50″ css=”.vc_custom_1562674187073{padding-left: 2px !important;}”][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1562574492523{padding-left: 2px !important;}”]\n
Documentary by Andrea Minoglio: Overexposed (2019)[\/vc_column_text][vc_video link=”https:\/\/vimeo.com\/359771483″ el_width=”50″ css=”.vc_custom_1562674187073{padding-left: 2px !important;}”][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1562574492523{padding-left: 2px !important;}”]\n
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)[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_video link=”https:\/\/vimeo.com\/341204479″ el_width=”50″][vc_column_text css=”.vc_custom_1562674307606{padding-left: 2px !important;}”]\n
Video: Dr. Rocco Falchetto teilt die faszinierende Geschichte hinter Afamelanotide zur Behandlung der erythropoietischen Protoporphyrie (Trendtage Gesundheit, Luzern, Schweiz, M\u00e4rz 2019)[\/vc_column_text][vc_video link=”https:\/\/www.youtube.com\/watch?time_continue=6&v=8GkIzNw2NhA” el_width=”50″ css=”.vc_custom_1562674323393{padding-left: 2px !important;}”][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1567622941310{padding-left: 2px !important;}”]\n
Two articles on the presentation and panel discussion with Dr. Rocco Falchetto and Dr. Jasmin Barman-Aks\u00f6zen at the DIA Europe 2019 Conference (Vienna, Austria, February 2019)<\/p>\n
DIA Europe: Patients Get Their Say. Now for the Doctors? Julian Upton (February 2019)<\/span><\/span><\/a><\/p>\n Patient Preferences \u2013 the science of tomorrow. (April 2019)<\/span><\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1567622956266{padding-left: 2px !important;}”]\n Press release European Medicines Agency (EMA) FDA News Release \u2013 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<\/u><\/span><\/span><\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1562576426024{padding-left: 2px !important;}”]\n Video: Dr. Jasmin Barman-Aks\u00f6zen shares insights on Health Technology Assessment of afamelanotide in Germany (Global Skin, Geneva, September 2017)[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_video link=”https:\/\/www.youtube.com\/watch?v=DuZfiSGM848″ el_width=”50″ css=”.vc_custom_1562576448039{padding-left: 2px !important;}”][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1562579660390{padding-left: 2px !important;}”]\n IPPN Comments To Consultation Afamelanotide for treating erythropoietic protoporphyria [ID927] (January 2018)<\/span><\/a><\/p>\n IPPN Appeal to negative Final Evaluation Determination, Afamelanotide for treating erythropoietic protoporphyria [ID927] (June 2018)<\/span><\/a><\/p>\n Article on the Appeal at NICE in Pink Sheet: Will NICE Change Its Mind On Scenesse After UK Public Hearing? Ian Schofield (September 2018)<\/span><\/a><\/p>\n Appeal Decision (October 2018)<\/span><\/span><\/a><\/p>\n IPPN submission of new evidence, post appeal [ID927] (January 2019)<\/span><\/span><\/a><\/p>\n IPPN poster on the appeal at NICE<\/span><\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]\n For Rocco Falchetto, stepping into the sun was extremely painful. Then one day, everything changed. eyeforpharma (October 2018): The Discovery That Changed My Life<\/a><\/span><\/p>\n Point of View, Medicine Access @ Point of Care, Dr. Jasmin Barman-Aks\u00f6zen (August 2019): Patient empowerment and access to medicines: Insights from a scientist-patient suffering from erythropoietic protoporphyria<\/a><\/span><\/p>\n Articolo in AboutPharma Online con la partecipazione della Dr. Francesca Granata, in occasione dell\u2019International Porphyria Patient Day e dell\u2019International Congress on Porphyrins & Porphyrias, Milano (Settembre 2019): Nuove armi contro le porfirie<\/span><\/a><\/p>\n Dr. Rocco Falchetto speaking about the IPPN at the International Porphyria Patient Day in Milan (September 2019) – Video: What is the IPPN?<\/a><\/span><\/p>\n Dr. Francesca Granata in un articolo della rivista di salute e benessere Profilo Salute (Settembre 2019): Il <\/a><\/span>\u00a0calvario di Francesca<\/a><\/span><\/span><\/p>\n The Patient – Patient-Centered Outcomes Research, Dr. Rocco Falchetto (November 2019): The Patient Perspective: A Matter of Minutes<\/a><\/span><\/p>\n Un aggiornamento dall’Osservatorio Malattie Rare su givosiran, il farmaco per le porfirie acute, da parte dell\u2019associazione Porfir.I.A.DomenicoTiso e l’IPPN (Dicembre 2019): Porfiria epatica acuta, givosiran approvato negli Stati Uniti<\/a><\/span><\/p>\n Un articolo dell’Osservatorio Malattie Rare sul congresso ICPP, con intervista alla Dott.essa Francesca Granata (Dicembre 2019): Porfiria, si \u00e8 tenuto a Milano il pi\u00f9 importante congresso internazionale<\/a><\/span><\/p>\n 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 opportunit\u00e0<\/a><\/span><\/p>\n[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]\n Video EPP campaign in Germany by Linda Richter (2017): EPP Video English<\/a><\/span><\/span><\/p>\n Video EPP Kampagne in Deutschland, Linda Richter (2017): EPP Video Deutsch<\/a><\/span><\/span>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1567622699705{padding-left: 2px !important;}”]\n Poster on EPP for the general public – Painful light intolerance since childhood? Think erythropoietic protoporphyria! Illustrations by Dr. Jasmin Barman-Aks\u00f6zen: <\/i>Poster_Painful_Light_Intolerance<\/span><\/a><\/p>\n Poster zu akuten Porphyrien f\u00fcr die Allgemeinheit – Massive Bauchschmerzen ohne Ursache? Schon an akute Porphyrie gedacht? Illustrations by Dr. Jasmin Barman-Aks\u00f6zen: Poster_Massive_Bauchschmerzen_akute_Porphyrie<\/span><\/a><\/p>\n Poster on acute porphyrias for the general public – Abdominal pain \u201cwithout a good reason\u201d? Think acute hepatic porphyria! Illustrations by Dr. Jasmin Barman-Aks\u00f6zen: Think acute hepatic porphyria!<\/span><\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]\n Langendonk et al. (2015), NEJM: Afamelanotide for Erythropoietic Protoporphyria<\/a><\/span><\/p>\n3. Approval<\/h3>\n
\nScenesse 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-Aks\u00f6zen was one of the patients at that meeting: Scenesse recommended for rare disease that causes intolerance to sunlight<\/a><\/span><\/span><\/p>\n4. Health Technology Assessment<\/h3>\n
IPPN as stakeholder at NICE<\/h3>\n[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1567622868852{padding-left: 2px !important;}”]\n
5. The power of Patient-Scientists:<\/h3>\n
6. Patient Advocacy<\/h3>\n
7. Key scientific publications on treatments in the porphyrias<\/h3>\n