Donidalorsen Reduces HAE Attacks, Study Shows
Hand swollen during hereditary angioedema attack. Sourced from Wikimedia Commons

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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“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

Hi! My name is Allison Lockwood and I have a rare blood disease called hereditary angioedema (HAE). This disease causes excessive swelling mainly to hands, feet, face, and throat, but…

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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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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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