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…
Speakers: Zahra Khan, Living with HAE & Autumn Burnette Join this live presentation featuring a physician who treats HAE and an HAE patient advocate. You will also have the opportunity…
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…
Speaker: Machelle Pecoraro, Living with HAE & Marc Riedl Join this live presentation featuring a physician who treats HAE and an HAE patient advocate. You will also have the opportunity…
Speaker: Shari Sharr, Living with HAE & Doug Johnston Join this live presentation featuring a physician who treats HAE and an HAE patient advocate. You will also have the opportunity…
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…
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…
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…
Loukisha shares her journey with hereditary angioedma (HAE). Living with a rare disease you'll experience highs and lows. Unfortunately the moments of struggle are unavoidable; all you can do is…
Hereditary Angioedemia (HAE) results when the blood is missing the C1-inhibitor protein. It causes unpredictable and sudden attacks of swelling on various parts of the body. It can affect practically…
There's some good news for the hereditary angioedema patient community this week! Shire, a global biotechnology company focused on rare diseases, announced in the Journal of the American Medical Association (JAMA) publication…
According to a story from Angioedema News, an investigational product from BioCryst Pharmaceuticals called BCX7353 was able to quickly subdue swelling attacks in hereditary angioedema in clinical trials. In addition,…
According to a story from pm360online.com, the global biotechnology company Shire plc recently announced its product Takhzyro (injectable lanadelumab) was approved by Health Canada after priority review. Takhzyro is indicated…
Initial results from a clinical trial investigating the effects of an experimental drug called BCX7353 in patients with hereditary angioedema suffering from acute attacks. For more detailed information, you can…
The US Food and Drug Administration has approved a drug called TakhzyroTM (lanadelumab-flyo) for the treatment of hereditary angioedema. This approval was based on supporting evidence from several studies, including from…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
