U.S. Senate Urged to Increase Federal Funding for Research into Hereditary Angioedema, a Rare and Serious Genetic Disorder
HAE Association president Anthony Castaldo provides testimony on the critical need for more research into rare, serious genetic disorder.
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.
HAE attacks that involve the face or throat can result in airway closure, asphyxiation and, if untreated, death. Because the disease is very rare, it is not uncommon for patients to remain undiagnosed for many years, receive inappropriate diagnoses or undergo unnecessary exploratory surgery. Experts estimate that HAE occurs in 1 in 10,000 to 1 in 50,000 people. Medications approved by the Food and Drug Administration (FDA) for treating the symptoms of HAE are now available in the U.S.
For more information about the HAEA's public policy program, please visit www.HAEA.org.
About the U.S. Hereditary Angioedema Association (HAEA)
Founded and staffed by HAE patients and HAE patient caregivers, the HAEA is a non-profit patient advocacy organization dedicated to serving angioedema patients. The Association provides HAE patients and their families with a support network and a wide range of services including physician referrals and individualized patient support. The HAEA's goal is to increase awareness of hereditary angioedema by providing patients and physicians with authoritative and readily accessible information. The HAEA is committed to advancing and conducting clinical research designed to improve the lives of HAE patients and ultimately find a cure. To learn more about the HAEA or join the Association, visit www.HAEA.org, email email@example.com or call 866-798-5598.
Laura de Zutter
MCS Healthcare Public Relations on behalf of the HAE Association
SOURCE U.S. Hereditary Angioedema Association (HAEA)Back to top