The U.S. Hereditary Angioedema Association (HAEA) announced today that the United States Senate has unanimously passed a resolution (S. Res. 286) recognizing May 16, 2012, as Hereditary Angioedema (HAE) Awareness Day. The resolution, offered by Senator Daniel Inouye (D-Hawaii) and Senator Saxby Chambliss (R-Georgia), is the result of a year-long political advocacy effort to generate recognition of the significant need for increased professional education regarding HAE, a rare and potentially fatal genetic disorder, and to highlight the need for further research aimed at improving diagnosis and treatment options for patients.
"This first annual HAE Awareness Day will put a spotlight on HAE, its symptoms, and the impact this challenging disorder has on patients and their families," said Janet Long, Executive Vice President of the HAEA. "We hope this national recognition will broaden awareness of HAE and prompt anyone who suffers from repeated bouts of swelling to seek appropriate diagnosis and treatment."
HAE involves episodes of edema, or swelling, in the face, feet, hands, throat, and abdomen. For most patients, HAE is caused by a defect or deficiency of the blood protein C1-esterase inhibitor. HAE experts estimate that this form of HAE occurs in 1 in 10,000 to 1 in 50,000 people. Swelling symptoms identical to HAE have been identified in families that have normal C1-esterase inhibitor levels. Commonly referred to as HAE III, scientists are studying the possible causes for swelling in this patient group. 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. Medications approved by the Food and Drug Administration (FDA) for treating the symptoms of HAE are now available in the U.S.
The goals of HAE Awareness Day are to:
- Increase awareness of HAE among the general public and medical community
- Support better care and an earlier and more accurate diagnosis for HAE patients
- Raise funds for further national and international initiatives
- Enhance the understanding that HAE patients can lead a healthy life
The day will help launch the first biannual HAE Global Conference to be held at the Scandic Hotel Sydhavnen in Copenhagen, Denmark. Findings from the conference will be the impetus for additional HAE research.
Funding and support of the HAEA’s public policy program, which encouraged the Senate to acknowledge the need for increased awareness and research, were provided by CSL Behring through the company’s Local Empowerment for Advocacy Development (LEAD) program.
For more information about HAE Awareness Day, please visit www.haeday.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 persons with angioedema resulting from C1-Inhibitor deficiency. 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 firstname.lastname@example.org or call 866-798-5598.
Laura de Zutter
MCS Healthcare Public Relations on behalf of the HAE Association