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About 599 results

ALLMedicine Protoporphyria Center

Research & Reviews  279 results

Association of Afamelanotide With Improved Outcomes in Patients With Erythropoietic Pro...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7081144
JAMA Dermatology; Wensink D, Wagenmakers MAEM et. al.

Mar 18th, 2020 - The effectiveness of afamelanotide treatment in patients with erythropoietic protoporphyria (EPP) in clinical practice who experience pain after light exposure that substantially impairs quality of life is unknown. To evaluate the association of a...

A multi-disciplinary approach utilizing filters for surgical procedures in erythropoiet...
https://doi.org/10.1016/j.jaad.2020.02.024
Journal of the American Academy of Dermatology; Levoska MA, Griffith JL et. al.

Feb 13th, 2020 - A multi-disciplinary approach utilizing filters for surgical procedures in erythropoietic protoporphyria.|2020|Levoska MA,Griffith JL,Nagai S,Collins K,Lim HW,|

Successful Liver Transplantation for Liver Failure With Erythropoietic Protoporphyria b...
https://doi.org/10.1016/j.transproceed.2019.12.004
Transplantation Proceedings; Hanaki T, Noda T et. al.

Feb 7th, 2020 - Erythropoietic protoporphyria is a rare disease of heme biosynthesis resulting in excessive accumulation of protoporphyrin in various organs. The most typical symptom is photosensitivity caused by activated protoporphyrins (wavelength ~400 nm). Ac...

Mild iron deficiency does not ameliorate the phenotype of a murine erythropoietic proto...
https://doi.org/10.1002/ajh.25743
American Journal of Hematology REFERENCES; Schmidt PJ, Hollowell ML et. al.

Jan 28th, 2020 - Reduced ferrochelatase activity in erythropoietic protoporphyria (EPP) causes the accumulation of protoporphyrin IX (PPIX) leading to acute cutaneous photosensitivity and liver injury. Many EPP patients also have a mild hypochromic, microcytic ane...

Protoporphyria
https://emedicine.medscape.com/article/1104061-overview

Dec 17th, 2019 - Background The term protoporphyria now encompasses two clinically similar disorders that most often result from hereditary mutations in one of three different genes. The most common is erythropoietic protoporphyria (EPP). It is an inherited disord...

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Drugs  2 results see all →

Clinicaltrials.gov  297 results

Scenesse - afamelanotide implant-CSM Clinical Supplies Management Europe GmbH
https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=a1533405-cdca-5ece-e053-2a95a90a90c5

Apr 13th, 2020 - SCENESSE® is indicated to increase pain free light exposure in adult patients with a history of phototoxic reactions from erythropoietic protoporphyria (EPP). SCENESSE is a melanocortin 1 receptor (MC1-R) agonist indicated to increase pain free li...

Scenesse - afamelanotide implant-CLINUVEL INC.
https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=94f53286-11dd-7fbb-e053-2a95a90a7c48

Mar 20th, 2020 - SCENESSE® is indicated to increase pain free light exposure in adult patients with a history of phototoxic reactions from erythropoietic protoporphyria (EPP). SCENESSE is a melanocortin 1 receptor (MC1-R) agonist indicated to increase pain free li...

Association of Afamelanotide With Improved Outcomes in Patients With Erythropoietic Pro...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7081144
JAMA Dermatology; Wensink D, Wagenmakers MAEM et. al.

Mar 18th, 2020 - The effectiveness of afamelanotide treatment in patients with erythropoietic protoporphyria (EPP) in clinical practice who experience pain after light exposure that substantially impairs quality of life is unknown. To evaluate the association of a...

A multi-disciplinary approach utilizing filters for surgical procedures in erythropoiet...
https://doi.org/10.1016/j.jaad.2020.02.024
Journal of the American Academy of Dermatology; Levoska MA, Griffith JL et. al.

Feb 13th, 2020 - A multi-disciplinary approach utilizing filters for surgical procedures in erythropoietic protoporphyria.|2020|Levoska MA,Griffith JL,Nagai S,Collins K,Lim HW,|

Successful Liver Transplantation for Liver Failure With Erythropoietic Protoporphyria b...
https://doi.org/10.1016/j.transproceed.2019.12.004
Transplantation Proceedings; Hanaki T, Noda T et. al.

Feb 7th, 2020 - Erythropoietic protoporphyria is a rare disease of heme biosynthesis resulting in excessive accumulation of protoporphyrin in various organs. The most typical symptom is photosensitivity caused by activated protoporphyrins (wavelength ~400 nm). Ac...

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News  21 results

FDA approves Clinuvel's rare genetic disorder treatment, shares at record high
https://www.reuters.com/article/us-clinuvel-pharma-fda/fda-approves-clinuvels-rare-genetic-disorder-treatment-shares-at-record-high-idUSKBN1WN20Y

Oct 8th, 2019 - (Reuters) - The U.S. Food and Drug Administration approved Australian drugmaker Clinuvel Pharmaceuticals Ltd’s treatment for a rare inherited disorder that causes skin damage from exposure to light, sending its shares to a record high on Wednesday...

FDA approves afamelanotide for treatment of rare condition with light-induced pain
https://www.mdedge.com/fedprac/article/209685/rare-diseases/fda-approves-afamelanotide-treatment-rare-condition-light?channel=268
Christopher Palmer

Oct 8th, 2019 - The Food and Drug Administration has approved afamelanotide (Scenesse) to “increase pain-free light exposure” in adults with a history of phototoxic reactions from erythropoietic protoporphyria, a rare condition that causes extremely painful react.

FDA OKs New Treatment Afamelanotide for Phototoxic Reactions
https://www.medscape.com/viewarticle/919622

Oct 7th, 2019 - The US Food and Drug Administration (FDA) has approved afamelanotide (Scenesse, Clinuvel), the first treatment to ease phototoxic reactions in patients with erythropoietic protoporphyria, according to an agency news release. Erythropoietic protopo...

Team identifies mutation that causes EPP
https://www.mdedge.com/hematology-oncology/article/185441/anemia/team-identifies-mutation-causes-epp
HT Staff

Sep 10th, 2017 - Red blood cells Researchers say they have discovered a genetic mutation that triggers erythropoietic protoporphyria (EPP). The team performed genetic sequencing on members of a family from Northern France who had EPP of a previously unknown geneti.

FDA approves first treatment to increase pain-free light exposure in patients with a rare disorder
http://www.fda.gov/news-events/press-announcements/fda-approves-first-treatment-increase-pain-free-light-exposure-patients-rare-disorder

For Immediate Release: October 08, 2019 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 er...

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