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,…
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…
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…
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…
by Danielle Bradshaw from In The Cloud Copy Hereditary angioedema (HAE) is a rare condition in which a person has swelling beneath their skin (which can occur in any part…
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…
HAE is not my story. But it’s definitely part of my story. Looking back, I realize that my late childhood and early teen years held some occasional, unexplained swelling events that…
Because of the current global situation involving coronavirus (COVID-19), many medical organizations have canceled or postponed their annual meetings. The American Academy of Allergy, Asthma, and Immunology (AAAAI) is one…
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…
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…
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…
Teresa Scruton is not a physican nor a nutritionist but she has been a person with hereditary angioedema (HAE) as well as a researcher for many years. Below she shares…
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…
About HAE Hereditary angioedema (HAE) is a rare disease that is caused by the deficiency or reduction of a protein called C1-INH in the body. When this protein is not present,…
By: Teresa Scruton Hereditary Angiodema Abdominal Attacks There are 3 types of Hereditary Angiodema (HAE) abdominal attacks: Lower abdominal - swelling in wall of colon (large bowel), that causes the…
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…
According to a story from Angioedema News, the UK's National Institute for Health and Clinical Excellence (NICE) has officially recommended the drug lanadelumab (marketed as Takhzyro) for coverage under the…
According to a story from Angioedema News, a recent study demonstrated the effectiveness of the medication Haegarda in reducing the number of swelling attacks experienced by hereditary angioedema patients. Preventative…
According to a story from Angioedema News, a recent study has found that the drug icatibant (marketed as Firazyr) can safely treat older patients with hereditary angioedema, a rare condition…
According to a story from Angioedema News, the results of a recent study have led authors to conclude that genetic testing can be useful for the diagnosis of hereditary angioedema…
As my children are getting older they seem to create elaborate stories of why they didn’t clean up their room or complete any other task on their to-do list. I’ve…
According to a story from Angioedema News, the drug development company Regenxbio has announced that it is in the process of developing a new gene therapy treatment for hereditary angioedema,…
According to a story from Angioedema News, a recent clinical trial has demonstrated that the drug conestat alfa (marketed as Ruconest) was able to successfully treat 96 percent of acute…
According to a story from Angioedema News, a team of researchers has used data from a recent study to provide up to date recommendations for diagnosing hereditary angioedema in the…
Thursday May 16th is HAE Day, when we observes the hopes, struggles, and resilience of the Hereditary Angioedema (HAE) patient community! What is HAE? “Angio” means pertaining to blood vessels, and…
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