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(US HAEA Patient Services Team Member Jenny Barnes was recently featured in her local newspaper. Read Jenny’s HAE story, submitted as her own personal HAE Day awareness effort contribution)
It is difficult to know exactly how many people have hereditary angioedema in the United States.
The U.S. Hereditary Angioedema Association estimates 1 in 10,000 to 1 in 50,000 have the disease, but it is frequently misdiagnosed.
The disease, a genetic malfunction, causes severe swelling in various parts of the body. Abdominal swellings can cause bouts of excruciating pain, nausea and vomiting.
The association said throat swelling is especially dangerous and can lead to death by asphyxiation.
Hereditary angioedema is often mistreated, and many times symptoms are diagnosed as psychosomatic, resulting in “referral for psychiatric evaluation.”
Unnecessary exploratory surgeries have also been reported.
Jenny Barnes, of Pendleton, lost her son to the disease.Read full article
-Low Rebound and Relapse Rates Observed in Patients Treated with KALBITOR-
-KALBITOR Study Data Demonstrate Clinically Meaningful Efficacy in Treatment of Acute Laryngeal Attacks of Hereditary Angioedema-
BURLINGTON, Mass.–(BUSINESS WIRE)– Dyax Corp. (NASDAQ: DYAX) today announced the presentation of data from KALBITOR® (ecallantide) clinical studies in hereditary angioedema (HAE) at the American Academy of Allergy, Asthma and Immunology (AAAAI) Annual Meeting in Orlando, Florida. The data were presented in four separate poster presentations and included data related to rebound and relapse rates in patients treated with KALBITOR as well as to KALBITOR for the treatment of acute laryngeal attacks of HAE. KALBITOR is indicated for the treatment of acute attacks of HAE in patients 16 years of age and older.
“Taken together, the results presented today enrich the KALBITOR efficacy profile and provide further support for its use against acute attacks of HAE,” stated Henry Li, M.D., Ph.D. of the Institute for Asthma and Allergy in Wheaton, MD. “Notably, low rebound and relapse rates observed among patients treated with KALBITOR evidence sustained relief from HAE attacks, an important consideration in selecting therapy.”
Albert L. Sheffer, II, M.D. of the Brigham and Women’s Hospital in Boston, MA, added: “Among the findings of our multi-study evaluation are data demonstrating that treatment with KALBITOR produced clinically meaningful and sustained improvement in laryngeal attacks due to HAE. The larynx is the most serious HAE attack site, and laryngeal attacks will affect nearly half of all individuals with HAE at least once during their lifetime. The availability of an on-demand treatment such as KALBITOR is, therefore, a valuable part of the individual patient’s treatment plan.”Read full article
The US Hereditary Angioedema Association (HAEA) is committed to providing our patient community with the personal support, information, and tools necessary to manage their HAE and improve quality of life. As part of this HAEA core mission, our Medical Advisory Board — which comprises the world’s foremost HAE physician/researchers — prepared an authoritative “expert consensus” document entitled,
An Approach to the Diagnosis and Treatment of Hereditary Angioedema.
This document provides HAEA friends with an authoritative, forward-thinking approach that
• sets the standard for the diagnosis and treatment of HAE in the United States, and
• can be used to advocate for medical care that is consistent with high bar set by the top HAE experts in our country.
Resolution recognizes need for more education, research into rare, serious genetic disorder.
By U.S. Hereditary Angioedema Association (HAEA)
U.S. Hereditary Angioedema Association (HAEA)
Last modified: 2012-02-06T17:08:10Z
Published: Monday, Feb. 6, 2012 – 9:07 am
Copyright 2012 . All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
HONOLULU, Feb. 6, 2012 — /PRNewswire/ — 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 email@example.com or call 866-798-5598 begin_of_the_skype_highlighting 866-798-5598 end_of_the_skype_highlighting.
Contact:Laura de ZutterMCS Healthcare Public Relations on behalf of the HAE Association800firstname.lastname@example.org
SOURCE U.S. Hereditary Angioedema Association (HAEA)Read full article
EXTON, Pa., Feb. 7, 2012 /PRNewswire/ — ViroPharma Incorporated (Nasdaq: VPHM) today announced the U.S Food and Drug Administration (FDA) issued a complete response letter regarding Cinryze® (C1 Esterase Inhibitor [Human]) industrial scale manufacturing expansion activities. Specifically, the FDA has three comments related to a portion of the cleaning validation for industrial scale manufacturing, of which only one requires additional unplanned activity. The company expects that the additional activity required to address this comment can be completed in a short time frame. The FDA also noted that it has not yet completed the review of ViroPharma’s January 2012 updated responses to observations specific to the September 2011 inspection of the Amsterdam facility. There are no remaining technical comments posed by FDA in the complete response letter. The company intends to provide an update to shareholders on specific timing of resubmission and expected action dates during the 2011 Financial Results conference call to be held later this month.
“We and our partner Sanquin will begin working immediately to respond to the FDA as expeditiously as possible,” said Robert Pietrusko, Pharm.D., ViroPharma’s vice president, global regulatory affairs and quality. “We remain confident in our ability to gain approval of the industrial scale manufacturing of Cinryze in 2012.”Read full article