{"id":100,"date":"2019-07-08T09:50:54","date_gmt":"2019-07-08T07:50:54","guid":{"rendered":"https:\/\/porphyria.network\/IPPN\/?page_id=100"},"modified":"2019-07-08T19:24:20","modified_gmt":"2019-07-08T17:24:20","slug":"links-und-files","status":"publish","type":"page","link":"https:\/\/porphyria.network\/IPPN\/de\/links-und-files\/","title":{"rendered":"Links und Files"},"content":{"rendered":"[vc_row][vc_column][vc_column_text css=”.vc_custom_1562572917900{padding-left: 2px !important;}”]\n

1. Hintergrundinformationen EPP<\/h3>\n

Video: Leben mit EPP, von Dr. Cornelia Dechant (2018):[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_video link=”https:\/\/www.youtube.com\/watch?v=DWAlzCaDnbM” el_width=”50″][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1562578974586{padding-left: 2px !important;}”]\n

2. Die Geschichte hinter Afamelanotide<\/h3>\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_column][\/vc_row][vc_row][vc_column][vc_video link=”https:\/\/www.youtube.com\/watch?time_continue=6&v=8GkIzNw2NhA” el_width=”50″ css=”.vc_custom_1562575475183{padding-left: 2px !important;}”][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]Zwei Artikel \u00fcber die Pr\u00e4sentation und die Podiumsdiskussion von Dr. Rocco Falchetto und Dr. Jasmin Barman-Aks\u00f6zen auf der DIA Europe 2019 Konferenz (Vienna, Austria, February 2019)<\/p>\n

DIA Europe: Patients Get Their Say. Now for the Doctors? Julian Upton (February 2019)<\/a><\/p>\n

Patient Preferences \u2013 the science of tomorrow. (April 2019)<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1562576343971{padding-left: 2px !important;}”]\n

3. Genehmigung<\/h3>\n

Pressemitteilung Europ\u00e4ische Arzneimittelagentur (EMA)
\nEmpfohlen f\u00fcr seltene Krankheiten, die eine Unvertr\u00e4glichkeit gegen\u00fcber Sonnenlicht verursachen. Patienten, die erstmals an Diskussionen \u00fcber Nutzen und Risiken eines Medikaments am CHMP teilnehmen (London, 24. Oktober 2014). Dr. Jasmin Barman-Aks\u00f6zen war eine der Patientinnen bei diesem Treffen:<\/p>\n

Scenesse recommended rare disease causes intolerance sunlight<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1562576565965{padding-left: 2px !important;}”]\n

4. Gesundheitstechnologiebewertung<\/h3>\n

Video: Dr. Jasmin Barman-Aks\u00f6zen gibt Einblicke in das Health Technology Assessment von Afamelanotide in Deutschland (Global Skin, Genf, 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_1562576602487{padding-left: 2px !important;}”][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1562606613077{padding-left: 2px !important;}”]\n

4a. IPPN als Stakeholder bei NICE<\/h3>\n

IPPN Comments To Consultation Afamelanotide for treating erythropoietic protoporphyria [ID927]<\/a><\/p>\n

IPPN Appeal to negative Final Evaluation Determination, Afamelanotide for treating erythropoietic protoporphyria [ID927], (June 2018)<\/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)<\/a><\/p>\n

IPPN submission of new evidence, post appeal [ID927], (January 2019)<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]\n

5. Die Macht der Wissenschaftler-Patienten:<\/h3>\n

Es ist sehr wichtig, uns zu unserem Ziel zur\u00fcckzubringen, indem wir menschliche Geschichten h\u00f6ren. Dr. Rocco Falchetto, eyeforpharma, p.15 (June 2019):<\/p>\n

13JUN19_Whitepaper.pdf<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1562581362250{padding-left: 2px !important;}”]\n

6. Patientenvertretung<\/h3>\n

Video: EPP Kampagne in Deutschland, Linda Richter (2017):<\/p>\n

http:\/\/barman.de\/EPP_Video.mov<\/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<\/p>\n

Poster_Painful_Light_Intolerance<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]\n

7. Wichtigste wissenschaftliche Publikation \u00fcber Behandlungen in den Porphyrien<\/h3>\n

Langendonk et al. (2015), NEJM: Afamelanotide for Erythropoietic Protoporphyria<\/a><\/p>\n

Biolcati et al. (2015), BJD: Long\u2010term observational study of afamelanotide in 115 patients with erythropoietic protoporphyria<\/a><\/p>\n

Sardh et al. (2017), Blood: Explore: A Prospective, Multinational Natural History Study of Patients with Acute Hepatic Porphyrias (AHP) with Recurrent Attacks<\/a>[\/vc_column_text][\/vc_column][\/vc_row]\n","protected":false},"excerpt":{"rendered":"

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Die Geschichte hinter Afamelanotide 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_column][\/vc_row][vc_row][vc_column][vc_video link=”https:\/\/www.youtube.com\/watch?time_continue=6&v=8GkIzNw2NhA” el_width=”50″ css=”.vc_custom_1562575475183{padding-left: 2px !important;}”][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]Zwei Artikel \u00fcber die…<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":[],"yoast_head":"\nLinks und Files - International Porphyria Patient Network<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/porphyria.network\/IPPN\/de\/links-und-files\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Links und Files - International Porphyria Patient Network\" \/>\n<meta property=\"og:description\" content=\"[vc_row][vc_column][vc_column_text css=”.vc_custom_1562572917900{padding-left: 2px !important;}”] 1. 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