HAE Junior’s Survey Highlights Differences and Similarities of HAE Adult vs. Pediatric Patient Priorities
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HAE Junior’s Survey Highlights Differences and Similarities of HAE Adult vs. Pediatric Patient Priorities

HAE Junior is a Czech-based patient organization aiming to improve the quality of life of children & youth with hereditary angioedema (HAE). It was set up in December 2019 in…

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Hereditary Angioedema Patients in the UK Get Early Access to New Treatment
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Hereditary Angioedema Patients in the UK Get Early Access to New Treatment

According to a story from GlobeNewswire, the company BioCryst Pharmaceuticals, Inc., recently announced that its drug berotralstat (marketed as Orladeyo) will be available in the UK under the Early Access…

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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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New Investigative Therapy for Hereditary Angioedema Found Efficacious in Study
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New Investigative Therapy for Hereditary Angioedema Found Efficacious in Study

Ionis Pharmaceuticals has just released their findings from a study investigating the effect of IONIS-PKK-LRx and IONIS-PKKRx in hereditary angioedema (HAE) patients with different forms of the disease. These therapies work to reduce…

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Hereditary Angioedema Patients Explain how an Oral Treatment Option Could Change Their Lives
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Hereditary Angioedema Patients Explain how an Oral Treatment Option Could Change Their Lives

Over 2018 and 2019, BioCryst Pharmaceuticals conducted two surveys to better understand the needs and expectations of hereditary angioedema (HAE) patients. Overall, they found that despite progress in HAE therapies,…

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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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May 16th is Hereditary Angioedema Day : Spreading Rare Disease Awareness
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May 16th is Hereditary Angioedema Day : Spreading Rare Disease Awareness

May 16th is celebrated annually as Hereditary Angioedema (HAE) Awareness Day. The event was established with the goal of spreading awareness about this rare condition among both the general public…

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RUCONEST Now Approved for Children with Hereditary Angioedema in Europe

The European Commission has just granted their approval to Pharming for an extended indication of RUCONEST (conestat alfa) for Hereditary Angioedema (HAE). This extension allows the therapy to be utilized for…

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Berotralstat, to Treat Hereditary Angioedema, Under EMA Review
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Berotralstat, to Treat Hereditary Angioedema, Under EMA Review

According to Angioedema News, the European Medicines Agency (EMA) is now reviewing berotralstat as a potential therapy to combat severe inflammation attacks in patients with hereditary angioedema. Hereditary Angioedema Hereditary…

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Study Assesses Rare Disease Treatments for Children From 2010-2018
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Study Assesses Rare Disease Treatments for Children From 2010-2018

According to a story from Charcot-Marie-Tooth News, a new study highlights the advances that have been made in the last decade for treating rare diseases that affect children. However, the…

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New Study Examines Biomarkers of Hereditary Angioedema not Caused by C1-INH
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New Study Examines Biomarkers of Hereditary Angioedema not Caused by C1-INH

Hereditary Angioedema Hereditary angioedema (HAE) is a rare disease which causes swelling episodes throughout the body, including the airways, gastrointestinal system, and extremities. Most commonly, HAE is caused by a…

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New Tool can Measure Disease Activity in Hereditary Angioedema Type 1 and 2
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New Tool can Measure Disease Activity in Hereditary Angioedema Type 1 and 2

According to a story from Angioedema News, a team of researchers and scientists have successfully developed a tool that is able to measure disease activity in hereditary angioedema that is…

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Study Reveals a More Efficient Approach for Diagnosing Certain Cases of Hereditary Angioedema

According to a story from Angioedema News, a recent study discusses a genetic procedure called allelic discrimination as a method for diagnosing hereditary angioedema. The study concluded that this method…

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Study Links Age of Onset and Year of Birth to Delayed Diagnosis for Hereditary Angioedema
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Study Links Age of Onset and Year of Birth to Delayed Diagnosis for Hereditary Angioedema

According to a study recently published in Allergy and Asthma Proceedings, certain risk factors may increase an individual's likelihood of receiving a late diagnosis for hereditary angioedema. Hereditary angioedema is…

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