The University of California, San Diego has announced pledges totaling $4.6 million for a new research center dedicated to the study and treatment of hereditary angioedema, a rare inherited blood disorder.

The funds from patient advocacy group US Hereditary Angioedema Association and four pharmaceutical companies — Shire Human Genetics Therapies, ViroPharma, Dyax Corp., and CSL 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. In addition to helping patients with the disorder get properly diagnosed as early as possible, the center aims to consolidate the available expertise needed to navigate treatment options.

Diverse forms of swelling, known collectively as angioedema, may affect almost any area of the body. During attacks, which can be life threatening, patients often are unable to engage in normal life activities. Hereditary angioedema is thought to affect one person in 50,000, or as many as 600,000 individuals in the U.S. Because HAE is so rare, people with the condition often go undiagnosed or misdiagnosed for years.

"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."