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The HAEA is pleased to present an incredible resource for HAE patients and families – a newly revised video program called HAE Essentials – A Patient’s Guide.
This video program is designed to provide clear and concise HAE information at the click of your mouse. Watch the 16 videos one at a time, or all in one sitting, to learn about HAE symptoms, diagnosis & testing, treatments, and much more.
The videos are presented in a new, easy to navigate e-zine format. Just click on the arrow on the right of the screen to move to the next video in the series or click on one in the rolling list at the bottom.
Tell your friends, family and co-workers to check it out, too! Send them this link – http://haeedu.com/hae_essentials/issue1/index.htmlRead full article
BURLINGTON, Mass.–(BUSINESS WIRE)– Dyax Corp. (NASDAQ: DYAX) the manufacturer of KALBITOR® (ecallantide) for the treatment of acute attacks of hereditary angioedema (HAE) in patients 16 years of age and older, has announced the launch of its HAE genetic counseling program. The program, which is available to all members of the HAE community, provides diagnosed HAE patients and their family members with a free counseling session.
“We are pleased to bring this important resource to the HAE community”, said Gustav Christensen, President and Chief Executive Officer of Dyax. “As leaders in this community, we see the provision of these types of resources and support as an important way to help meet the needs of HAE patients”.
Dyax’s genetic counseling program provides eligible HAE patients with access to board-certified and state licensed genetic counselors that are available nationally for phone, internet or in-person counseling sessions. The service includes an overview of the condition, family planning counseling and patient education and resources.Read full article
First International Workshop on Type III HAE Takes Place
April 9, 2012: The US Hereditary Angioedema Association (US HAEA) and its Medical Advisory Board are sponsoring a ground-breaking scientific workshop that will focus on non-allergic, familial swelling in patients with normal levels of the plasma protein, C1 inhibitor. This condition is currently referred to as Type III HAE. The workshop will be held on April 28, 2012 in Boston, MA.
US HAEA President Anthony Castaldo said, “This workshop is consistent with the US HAEA’s decade-long effort to improve patients’ quality of life. We are dedicated to supporting those who suffer from familial, non-allergic swelling such as Type III HAE by (1) encouraging membership in the US HAEA and interaction with our caring and compassionate Patient Services Team, and (2) advocating for research that identifies the causes of and treatments for this type of angioedema.”
Dr. Bruce Zuraw, Chair of the US HAEA’s Medical Advisory Board, stated, “The intent of this workshop is to bring together world class angioedema researchers with the objective of clarifying the current knowledge of Type III HAE, defining the gaps in our knowledge, and laying out a roadmap for research in this important area.”
The results of this scientific workshop will be published and will serve as a springboard for future conferences and symposia.
For more information on HAE please visit: www.haea.org.
About US HAEA:
US HAEA – the US Hereditary Angioedema Association, Inc. (US HAEA) was founded and staffed by HAE patients and HAE patient caregivers. We are a non-profit patient advocacy organization dedicated to serving persons with hereditary swelling conditions caused by C1 Inhibitor Deficiency and other undetermined causes. 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. Our goal is to increase awareness of Hereditary Angioedema by providing patients and physicians with authoritative and readily accessible information. We are committed to advancing and conducting clinical research designed to improve the lives of HAE patients and ultimately find a cure.
Company raises $17,700 for the United States Hereditary Angioedema Association at the American Academy of Allergy, Asthma and Immunology Annual Meeting
BURLINGTON, Mass.–(BUSINESS WIRE)– In honor of the first ever HAE Day upcoming on May 16, 2012, Dyax Corp. (NASDAQ: DYAX), the manufacturer of KALBITOR® (ecallantide) for the treatment of acute attacks of HAE in patients 16 years of age and older, announced a donation of $17,700 to the United States Hereditary Angioedema Association (HAEA), the largest Hereditary Angioedema (HAE) patient group in the world. The donation results from fundraising activities held at the American Academy of Allergy, Asthma and Immunology (AAAAI) Annual Meeting in Orlando, FL, where Dyax dedicated a significant portion of their booth to recognizing HAE Global Awareness Day on May 16, 2012 and raising funds to support the HAEA.
The Dyax booth at AAAAI featured two treadmills on which meeting attendees were invited to walk or run to benefit the HAEA. The company pledged $100 to the HAEA for every mile clocked by meeting attendees, which included clinicians, academicians and allied health professionals, with participants logging nearly 200 miles for the cause. One particularly enthusiastic physician ran ten miles, generating a single donation of $1,000. The fundraiser was the first in a series of events supported by Dyax and will culminate in a donation presented to the HAEA on HAE Day, taking place on May 16, 2012.Read full article
CSL Behring announced today that treatment with Berinert®, C1 Esterase Inhibitor (Human) within six hours of the onset of an acute hereditary angioedema (HAE) attack provides faster symptom relief than later treatment, according to data presented at the 2012 American Academy of Allergy, Asthma & Immunology (AAAAI) Annual Meeting. While HAE patients treated within six hours of attack onset and those treated six hours or more after attack onset experienced a similar median time to onset of symptom relief, symptoms resolved considerably faster in patients who were treated earlier.
“For HAE patients, timely treatment is a key factor in limiting the severity of an attack,” said Timothy J. Craig, D.O., Professor of Medicine and Pediatrics at Penn State University in Hershey, Pennsylvania, and one of the study’s investigators. “While treatment with Berinert before or after six hours starts to provide patients with symptom relief, our results show that treating an HAE attack at the first sign of symptoms expedites the resolution of those symptoms.”
According to an analysis of data from both the I.M.P.A.C.T. 1 and I.M.P.A.C.T. 2 studies, median times to onset of symptom relief after treatment with 20 U/kg Berinert were similar, regardless of treatment timing (30 and 25 minutes for treatment within 6 hours of attack onset versus 31 and 16 minutes for treatment at six hours or later), while median times to complete resolution were shorter if treatment was received within six hours (2.8 and 12.6 hours) rather than at six hours or later (7.9 and 14.4 hours). Additionally, with 20 U/kg Berinert versus placebo after treatment within 6 hours, median times to onset of symptom relief and complete resolution of symptoms were considerably faster (hazard ratios: 3.36 and 4.30). Treatment at six hours or later showed slightly less pronounced differences in median times to onset of symptom relief and complete resolution relative to placebo (hazard ratios: 1.18 and 1.61).Read full article