CSL Behring launches new online resource for patients with Hereditary Angioedema, a rare and serious disorder
Wealth of health information, medical news and learning opportunities build community among patients throughout North America
King of Prussia, PA — 07 March 2007
Patients with a rare disease called Hereditary Angioedema (HAE)—and their doctors—can now find comprehensive information about the condition on a new website, www.AllAboutHAE.com, launched today by CSL Behring. The site, which is designed in two sections—one for patients and the other for physicians—presents an array of features, including:
- An online journal tool designed to encourage patients to track symptoms of their condition and their own progress toward better health;
- Information on HAE and how it affects the body;
- A special “Family Tree” section that helps patients better understand how HAE presents in families,
- An “Ask An Expert” section offering medical answers from Board Certified physician, Dr. Henry Li, and
- Information on eligibility for and enrollment in I.M.P.A.C.T., a clinical trial that examines treatment for HAE. I.M.P.A.C.T. is now enrolling eligible patients.
- Links to additional resources, including patient organizations and medical sites.
“This new site is truly a welcome addition to the existing base of information on HAE,” said Elyse Myers, a resident of Manteca, California, who suffered her first HAE attack 18 years ago at age 34. “Because HAE is such a rare and difficult-to-diagnose condition, many people who have it spend long periods of precious time searching for clues about how to manage it. Besides being a health threat, this searching can lead to feelings of deep isolation and anxiety for patients and their families. AllAboutHAE.com is certain to be an important tool for conveying valuable information, while building community so that HAE patients can achieve a better quality of life.”
Physicians, too, will find the new site useful in learning about and recognizing HAE. Tools used in making an accurate diagnosis of HAE are available—including the Canadian and European Algorithms—are also presented, as well as information about what to do in case of an emergency, emerging new treatments for HAE, and more.
About Hereditary Angioedema
HAE is a genetic disorder characterized by episodes of edema (swelling) in the extremities (the hands and feet), the face, the abdomen, and/or the larynx. An estimated 6,000-10,000 or more people in the United States have HAE. Patients who have abdominal attacks experience episodes of severe pain, diarrhea, nausea, and vomiting that is caused by swelling of the intestinal wall. Attacks that involve the face and throat can result in airway closure, asphyxiation and death, if left untreated. HAE is caused by a genetic deficiency of C1-INH, which is inherited in an autosomal dominant manner. There is no approved treatment for acute HAE attacks available in North America.
About CSL Behring
CSL Behring is a global leader in the plasma protein biotherapeutics industry. Passionate about improving the quality of patients' lives, CSL Behring manufactures and markets a range of safe and effective plasma-derived and recombinant products and related services. The company's therapies are used in the treatment of immune deficiency disorders, hemophilia, von Willebrand disease, other bleeding disorders and inherited emphysema. Other products are used for the prevention of hemolytic diseases in the newborn, in cardiac surgery, organ transplantation and in the treatment of burns. The company also operates one of the world's largest plasma collection networks, ZLB Plasma. CSL Behring is a subsidiary of CSL Limited, a biopharmaceutical company with headquarters in Melbourne, Australia. For more information, visit www.cslbehring.com.
Sheila A. Burke
Director, Communications & Public Relations
Worldwide Commercial Operations, CSL Behring