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About 599 results

ALLMedicine™ Protoporphyria Center

Research & Reviews  287 results

Increased phototoxic burn tolerance time and quality of life in patients with erythropo...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7437008
Orphanet Journal of Rare Diseases; Barman-Aksözen J, Nydegger M et. al.

Aug 19th, 2020 - Erythropoietic protoporphyria (EPP) is an ultra-rare genetic disorder (prevalence 1:150`000) characterized by instant painful phototoxic burn reactions in skin exposed to visible light. Afamelanotide is the first clinically tested therapy effectiv...

Erythropoietic protoporphyria in pregnancy.
https://doi.org/10.1080/01443615.2020.1777954
Journal of Obstetrics and Gynaecology : the Journal of the Institute of Obstetrics and Gynaecology; Nevins EG, Wijesiriwardana A

Jul 26th, 2020 - Erythropoietic protoporphyria in pregnancy.|2020|Nevins EG,Wijesiriwardana A,|

Human aminolevulinate synthase structure reveals a eukaryotic-specific autoinhibitory l...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7272653
Nature Communications; Bailey HJ, Bezerra GA et. al.

Jun 5th, 2020 - 5'-aminolevulinate synthase (ALAS) catalyzes the first step in heme biosynthesis, generating 5'-aminolevulinate from glycine and succinyl-CoA. Inherited frameshift indel mutations of human erythroid-specific isozyme ALAS2, within a C-terminal (Ct)...

Association of Afamelanotide With Improved Outcomes in Patients With Erythropoietic Pro...
https://doi.org/10.1001/jamadermatol.2020.0352
JAMA Dermatology; Wensink D, Wagenmakers MAEM et. al.

Mar 17th, 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,|

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Drugs  2 results see all →

Clinicaltrials.gov  297 results

Increased phototoxic burn tolerance time and quality of life in patients with erythropo...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7437008
Orphanet Journal of Rare Diseases; Barman-Aksözen J, Nydegger M et. al.

Aug 19th, 2020 - Erythropoietic protoporphyria (EPP) is an ultra-rare genetic disorder (prevalence 1:150`000) characterized by instant painful phototoxic burn reactions in skin exposed to visible light. Afamelanotide is the first clinically tested therapy effectiv...

Erythropoietic protoporphyria in pregnancy.
https://doi.org/10.1080/01443615.2020.1777954
Journal of Obstetrics and Gynaecology : the Journal of the Institute of Obstetrics and Gynaecology; Nevins EG, Wijesiriwardana A

Jul 26th, 2020 - Erythropoietic protoporphyria in pregnancy.|2020|Nevins EG,Wijesiriwardana A,|

Human aminolevulinate synthase structure reveals a eukaryotic-specific autoinhibitory l...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7272653
Nature Communications; Bailey HJ, Bezerra GA et. al.

Jun 5th, 2020 - 5'-aminolevulinate synthase (ALAS) catalyzes the first step in heme biosynthesis, generating 5'-aminolevulinate from glycine and succinyl-CoA. Inherited frameshift indel mutations of human erythroid-specific isozyme ALAS2, within a C-terminal (Ct)...

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...

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News  13 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.

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...

Afamelanotide improves erythropoietic protoporphyria
https://www.mdedge.com/familymedicine/article/100975/rare-diseases/afamelanotide-improves-erythropoietic-protoporphyria
Pediatric News; Mary Ann Moon

Jul 1st, 2015 - Afamelanotide dramatically reduces the number and severity of phototoxic reactions, shortens recovery time, and markedly improves disease-related quality of life in adults who have erythropoietic protoporphyria, according to a report published onl.

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