Most people with hereditary angioedema (HAE) who received a single, 50 mg dose of lonvoguran ziclumeran, also called lonvo-z and formerly known as NTLA-2002, in a clinical trial have remained free from swelling attacks and no longer require long-term preventive therapy up to three years of follow-up. That’s according…
Discussion
For some people, advocacy is a choice — a hobby, calling, or passion project they pick up when they have the time, energy, or interest. But for those of us living with rare diseases, chronic illnesses, and bodies that don’t follow the rules, advocacy becomes something entirely different. It becomes…
Note: This story was updated Dec. 15, 2025, to clarify the FDA approval covers a new oral pellet formulation of Orladeyo. The U.S. Food and Drug Administration (FDA) expanded the approval of Orladeyo (berotralstat), making it the only oral treatment approved in the U.S. as a prophylactic (preventive) therapy…
Discussion
Everyone experiences health limitations at some time or another, whether it’s an injury or something as simple as a cold or flu. However, many of us with rare diseases and other chronic illnesses have to regularly weigh the consequences of our symptoms against our well-being. When I was young and…
Angioedema is the formal medical term for swelling under the skin. It usually occurs as part of an allergic reaction, but has forms that are not due to allergies.
Acute angioedema often occurs as part of an allergic reaction to various allergens or triggers. These can include certain foods, insect bites or stings, medications, and natural rubber products like latex.
Angioedema and hives often occur at the same time. However, angioedema causes large, thick welts which may not be itchy, whereas hives are smaller and usually itchy.
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