HAE Patient Story: Finding the Bright Side of Things
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HAE Patient Story: Finding the Bright Side of Things

Note: This patient story was contributed by one of Patient Worthy’s partners, HAE Junior – an organization dedicated to improving the lives of children and young people living with hereditary…

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Experimental Treatment Sebetralstat Shows Promise in Phase 3 HAE Study
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Experimental Treatment Sebetralstat Shows Promise in Phase 3 HAE Study

Imagine if you had recurring attacks of severe and unexplained swelling beneath your skin. For individuals living with hereditary angioedema (HAE), a rare inherited disorder, this isn't just a mere…

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Deucrictibant Reduces Monthly HAE Attacks by 84.5% in Phase 2 Study
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Deucrictibant Reduces Monthly HAE Attacks by 84.5% in Phase 2 Study

  Last year, the FDA placed a clinical hold on an Investigational New Drug (IND) application for deucrictibant for the on-demand and prophylactic treatment of individuals living with hereditary angioedema…

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“The Hospital Told Me Not to Come Back Because They Didn’t Know What to do For Me:” An HAE Patient Story
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“The Hospital Told Me Not to Come Back Because They Didn’t Know What to do For Me:” An HAE Patient Story

Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…

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Positive Phase 1 Data Available on Sebetralstat for HAE
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Positive Phase 1 Data Available on Sebetralstat for HAE

  According to a late October 2022 news release from pharmaceutical company KalVista Pharmaceuticals, Inc. (“KalVista”), the company released positive data from a Phase 1 study evaluating oral sebetralstat for…

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Company Halts Development of Hereditary Angioedema Drug Following Safety Issues
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Company Halts Development of Hereditary Angioedema Drug Following Safety Issues

According to a story from BioPharma Dive, KalVista Pharmaceuticals has halted its clinical trial evaluating an investigational therapy in development for hereditary angioedema. The trial had included a total of…

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Donidalorsen Reduces HAE Attacks, Study Shows
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Donidalorsen Reduces HAE Attacks, Study Shows

In patients with hereditary angioedema (HAE), the C1-inhibitor blood protein does not function properly, allowing bradykinin peptides to build up in the body. These then cause inflammation and fluid leakage;…

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ERN-RITA Enables Virtual Health Consultations With European Experts
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ERN-RITA Enables Virtual Health Consultations With European Experts

Note: this story was originally published by HAE Junior, a Patient Worthy partner Interview with Malena Vetterli from the European Reference Network (ERN-RITA) for rare immunodeficiencies, autoinflammatory and autoimmune diseases.…

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HAE Junior’s Drawing Exhibition Unveiled the Dreams and Ambitions of Children Living With Hereditary Angioedema

HAE Junior’s drawing exhibition unveiled the dreams, wishes, and ambitions of children & teenagers living with hereditary angioedema (HAE). The patient organization HAE Junior organized a drawing exhibition named We…

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