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Two-and-a-Half Million Women May Have A Bleeding Disorder…Without Even Knowing It

Von Willebrand Disease Can Lead to Serious Health Complications for Women

SAN DIEGO, CA — 27 October 2005

As many as 2.5 million women may have an undiagnosed bleeding disorder that, if not properly treated, could lead to serious health problems, medical experts told a mostly female audience at the National Hemophilia Foundation’s (NHF) 57th Annual Meeting today. Women with some forms of von Willebrand Disease (vWD) are at greater risk for miscarriage, life-threatening bleeding following surgery and childbirth, and for undergoing unnecessary hysterectomies.

Von Willebrand disease, the most common hereditary bleeding disorder in the United States,1 affects between three and six million Americans, about half of whom are women. 2,3 Since vWD frequently manifests in women as a gynecological problem, many are unaware that they have the disorder.2

“Von Willebrand disease can be diagnosed from the patient’s history and the results of blood tests. A timely diagnosis is helpful in ensuring appropriate treatment and preventing complications,” said Andra James, MD, director of the Women’s Hemostasis and Thrombosis Clinic at Duke University, chair of Project Red Flag’s Women with Bleeding Disorders Task Force, and a women with von Willebrand disease. “The key is awareness of the symptoms or ‘red flags’ that both women and their doctors should recognize and act on.”

Project Red Flag is the NHF’s national public awareness campaign created to educate women and their doctors about diagnosing and treating bleeding disorders.

“Von Willebrand disease is a serious health issue for women. We are pleased to hold the first-ever consumer symposium to expand awareness of this problem,” said Alan Kinniburgh, Ph.D., chief executive officer of the National Hemophilia Foundation. “We encourage all women to increase their knowledge of bleeding disorders and to see their doctor immediately if they suspect they have symptoms.”

The Project Red Flag symposium was supported by an educational grant from ZLB Behring.

About von Willebrand Disease

Von Willebrand disease is caused by a deficiency or abnormality of the von Willebrand factor, a protein in the blood that is necessary for normal blood clotting. Men and women are equally likely to be affected by VWD.4 VWD is classified by types, ranging from Type I (the most common and mild) to Type III (the most severe).2

Women with VWD are more likely to experience heavy, prolonged menstruation.2 Other common symptoms of VWD include frequent nosebleeds and easy bruising.2 Bleeding can be mild or serious and can occur as a result of injury, or without any obvious cause. More serious symptoms include bleeding into joints and internal organs. The VWD patient may require special care during dental procedures, surgery and childbirth.5

There is no “cure” for VWD, but it can be treated. Specific treatments may include desmopressin acetate to release stored von Willebrand factor; von Willebrand factor replacement therapies, such as Humate-P® Antihemophilic Factor/von Willebrand Factor Complex (Human) Dried, Pasteurized; and oral contraceptives to reduce menstrual bleeding and raise von Willebrand factor in the bloodstream.5

Possible adverse events with the use of Humate-P® include allergic reaction, urticaria (hives), chest tightness, rash, pruritus (itching) and edema (swelling). Anaphylactic reaction can occur in rare instances.

Humate-P® is derived from human plasma. As with all plasma-derived products, the risk of transmission of infectious agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent, cannot be completely eliminated.

Please visit www.cslbehring.com to read the prescribing information for Humate-P®.

About the National Hemophilia Foundation and Project Red Flag

The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research.

Established in 1948, the National Hemophilia Foundation is a non profit 501(c)3 organization with chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC).

Project Red Flag is NHF’s education and public awareness program to reach out to women with bleeding disorders and to raise awareness of bleeding disorders among all women. For more information about Project Red Flag, log onto www.projectredflag.org or call NHF’s Information Resource Center at 800-42-HANDI.

About ZLB Behring

ZLB Behring is a global leader in the plasma protein biotherapeutics industry. Dedicated to improving the quality of life for patients throughout the world, ZLB Behring provides safe and effective plasma-derived and recombinant products and offers patients a wide range of related services. The company’s broad portfolio of life-saving therapeutics is used in the treatment of individuals with hemophilia and other bleeding disorders, immune deficiency disorders and inherited emphysema; the prevention of hemolytic diseases for the newborn; cardiac surgery patients; and shock and burn victims. Additionally, ZLB Behring operates one of the world’s largest, fully-owned plasma collection networks. ZLB Behring is a subsidiary of CSL Limited, a biopharmaceutical company that operates worldwide from its headquarters in Melbourne, Australia. For more information, please visit www.cslbehring.com. The website www.allaboutbleeding.com is a resource dedicated to increasing awareness about vWD.

1 National Heart, Lung and Blood Institute Disease and Conditions Index. Who gets von Willebrand disease? Available at: http://www.nhlbi.nih.gov. Accessed September 30, 2005.

2 National Hemophilia Foundation. von Willebrand Disease. Available at: http://www.hemophilia.org/bdi/bdi_types3.htm. Accessed: September 30, 2005.

3 U.S. Census Bureau. U.S. POPClock Projection. Available at: http://www.census.gov/cgi-bin/popclock. Accessed: September 30, 2005.

4 ZLB Behring. The Role of von Willebrand Factor in Platelet Adhesion and Aggregation (Flip Chart).

5 AllAboutBleeding.com. What is von Willebrand Disease (VWD)? Available at: http://www.allaboutbleeding.com/vwd_and_you/view.asp?id=4634.


Name: Susan Zimmerman
Title: Vice President for Marketing and Communications
National Hemophilia Foundation
Phone: 212-328-3720
E-mail: szimmerman@hemophilia.org
Name: Sheila A. Burke
Title: Director, Communications & Public Relations
ZLB Behring
Department: Worldwide Commercial Operations
Phone: 610-878-4209
484-919-2618 (Mobile)
Fax: 610-878-4219
E-mail: Sheila.Burke@zlbbehring.com

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