Help us find a cure!
Learn how >
HONOLULU, June 12, 2012 /PRNewswire/ — Today, the U.S. Hereditary Angioedema Association (HAEA) announced that it has appealed to the U.S. Senate Appropriations Committee to increase federal research funding for hereditary angioedema (HAE), a rare and potentially fatal genetic disorder. As a part of the Committee’s annual “public witness testimony” hearing, which allows outside experts and stakeholders to advocate for fiscal year 2013 funding, Anthony J. Castaldo, president of the HAEA, called for the inclusion of HAE in the peer-reviewed, medical research program sponsored by the Department of Defense.
“Even with our current understanding of HAE, a significant unmet medical need still exists, and there is a critical need for additional research into the causes and treatment of this serious and life-threatening disorder,” said Castaldo. “Our hope is that by encouraging the inclusion of HAE in the important medical research conducted by the Department of Defense, we can expedite accurate diagnosis and effective treatment for all HAE patients.”
The HAEA testimony is part of the Association’s ongoing political advocacy efforts to highlight and enhance recognition of the significant need for both increased education regarding HAE, and further research aimed at improving diagnosis and treatment options for patients.
HAE involves episodes of edema, or swelling, in the face, feet, hands, throat and abdomen. For many patients, HAE is caused by a defect or deficiency of the blood protein C1-esterase inhibitor. However, swelling symptoms identical to HAE have also been identified in families where patients have normal C1-esterase inhibitor levels, and there is a critical need for additional research into the genetic and biochemical markers for this form of HAE.