Hereditary angioedema (HAE) is absolutely no fun at all. It’s an inherited blood disorder that’s pretty rare, and as with most rare disorders, there just isn’t a whole lot of money around to treat it or study it. An HAE flare-up can make a sufferer’s hand look like a water balloon, but attacks can actually strike any part of the body, and the most severe ones can be life-threatening.
Which is probably why patient advocacy group US Hereditary Angioedema Association, together with four pharmaceutical companies—Shire Human Genetics Therapies, ViroPharma, Dyax Corp., andCSL Bering System—will help establish the US HAEA Angioedema Center at the UC San Diego Health System, the first comprehensive angioedema center in the United States.
The pledges total $4.6 million combined, and they will go towards erecting a research center on the campus—a research center dedicated to studying the disorder. Some emphasis will be placed on early detection, as well, as patients are often mis-diagnosed.
Incidence of HAE is thought to be as high as one person in 50,000—which would translate into about 60,000 people living with the disorder in the U.S. Lately, UC San Diego has been seeing a lot of gifts that emphasize the genetic side of medicine, and though this project seems to center more on aspects of patient care, we’re betting some genetic revelations may be in store further done the line. Remember, all inherited disorders have their roots in genetic abnormalities.
"The US HAEA Angioedema Center at UC San Diego will lead the charge in establishing 'model' approaches to HAE treatment that focus on allowing patients to lead as normal of a life as possible," said US HAEA president Anthony J. Castaldo, whose daughter was diagnosed with the disease at age 5. "As an advocacy organization founded and run by patients and caregivers, we have an inherently high level of empathy for what our patients go through in dealing with this chronic, debilitating, and potentially fatal rare disease."