New Results Published from Phase 3 Clinical Trial Evaluating Berotralstat for HAE

  On October 22, 2020, BioCryst Pharmaceuticals, Inc. ("BioCryst") announced the publication of data from a Phase 3 clinical trial evaluating berotralstat for patients with hereditary angioedema (HAE). As a…

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Arabel Spent Quarantine With her Mom and her Paints: An HAE Patient Story
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Arabel Spent Quarantine With her Mom and her Paints: An HAE Patient Story

Arabel Standingbear sketches figures with lead pencils and paints realistic scenes with acrylics. Her poem was accepted by a museum. She has won in local art contests between schools, and…

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Scientists Have Identified Genes Involved in Hereditary Angioedema Acute Attacks

Researchers have carried out a study into the genetic mechanisms involved in hereditary angioedema acute attacks. They found that two genes, called uPAR and ADM, had a particularly strong influence.…

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Living with Hereditary Angiodema: My Life was Changed in an Instant, Part Two
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Living with Hereditary Angiodema: My Life was Changed in an Instant, Part Two

Have you read part one of Loukisha's story? Check it out here! When I imagined life with my husband and children my plans didn’t include surgeries, walkers, canes, a wheelchair,…

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Living with Hereditary Angiodema: My Life was Changed in an Instant, Part One
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Living with Hereditary Angiodema: My Life was Changed in an Instant, Part One

From birth until my mid-thirties I was a very active person. I loved dancing West Coast Swing, doing yoga, and cooking large meals for my ‘Ohana. The word "'Ohana" describes…

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Treatment for Hereditary Angiodema Gets Marketing Approval From the EMA
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Treatment for Hereditary Angiodema Gets Marketing Approval From the EMA

According to a recent story from pm360online.com, the pharmaceutical company Shire announced that the marketing application for its drug product lanadelumab has gained approval from the European Medicines Agency (EMA).…

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This FDA Approval for Haegarda Just Changed Lives
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This FDA Approval for Haegarda Just Changed Lives

A new therapy option for hereditary angioedema (HAE) has recently received FDA approval! Marketed as Haegarda by biopharmaceutical company, CSL Behring, this subcutaneous C1 Esterase Inhibitor is now usable in…

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Promising Results From Preventative HAE Treatment Study
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Promising Results From Preventative HAE Treatment Study

Attention hereditary angioedema patients: preventative treatment is on the horizon! Shire plc is one of the global leaders in rare disease research and pharmacology, and the group recently released positive…

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HAE In the News

Want some more news, events and announcements on HAE? We got 'em! [one_half]     [/one_half] [one_half_last] Get the Most Updated HAE Treatment Information Treatments Are Available: What Now? New,…

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Editor’s Choice: Dreaming of the Golden Years on Super Bowl Sunday

Got the post-Superbowl blues? Then check out these uplifting rare disease stories! One amazing young woman with cystic fibrosis got a sweet shout-out on Super Bowl Sunday, and another older…

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Editor’s Choice: When MG Attacks, Learn How to Fight

Happy Friday Patient Worthians! What happens when big pharma combines forces? Also, what are you doing in March? We have a conference for you! What are the complications of having multiple…

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