Patient Education Summits to Address Special Challenges of Hemophilia Patients and Their Families
2009年8月27日 - 10:03PM
PRニュース・ワイアー (英語)
Novo Nordisk Helps Provide Unique Opportunity for Patients to
Connect and Learn from Others with the Disease PRINCETON, N.J.,
Aug. 27 /PRNewswire-FirstCall/ -- More than 160 families of
patients living with a rare form of hemophilia are coming together
at educational summits sponsored this fall by the National
Hemophilia Foundation (NHF) and the Center for Biomedical
Continuing Education (CBCE). For the fifth year, the Inhibitor
Education Summits will connect patients and their families with
expert healthcare professionals and fellow patients to address
pertinent topics such as effective pain management, exercise and
nutrition, financial security, and psychological wellbeing. The
summits are supported by an educational grant from Novo Nordisk.
Hemophilia is a chronic, inherited bleeding disorder that occurs
because certain blood clotting factors are missing or do not work
properly. Spontaneous internal bleeding can occur, especially in
the joints and muscles. The 2009 summits will take place in
Hollywood, C.A., August 27-30 and in Washington, D.C., September
17-20. These summits are the first and only events of their kind
that focus specifically on patients with inhibitors. Inhibitors are
rare, affecting approximately 800 to 900 Americans. Inhibitors are
a serious complication that can develop after treatment in as many
as 30 percent of people with hemophilia, most commonly in young
children. These patients develop antibodies (or inhibitors) that
circulate in the blood stream and actually neutralize, or attack
clotting replacements, resulting in an increased risk of bleeding,
arthropathy (or joint disease), physical disability and death.
People living with this disease often navigate tremendous
challenges, both physically and emotionally. Sid Ramirez, age 21,
has lived with hemophilia his entire life. He developed inhibitors
at the age of three. His condition led to significant problems with
his knee joints, leaving Sid wheelchair bound by age 11. He
underwent lateral knee replacement surgery as a teenager, which
enabled him to walk again. "The summits allow others living with
inhibitors and their families to learn from each other's
experiences and from experts. No one can understand what you go
through as well as those who have experienced it themselves and
their families," said Sid. "Hemophilia has significance in the
decisions I make, but I will not let it be the deciding factor."
Currently enrolled in culinary school to pursue his lifelong
passion for cooking, Sid is excited about the future ahead. NHF
Chief Executive Officer Val Bias has a special reason for
participating in the summits. He's also a person with hemophilia.
"Education has been a cornerstone of the NHF, and the Inhibitor
Education Summit is a prime example of that," said Bias, who will
also speak at both summits. "We believe it is critical to be able
to provide these kinds of programs that help patients and their
families achieve greater success in managing inhibitors." In
addition to education for patients and caregivers, there is a
comprehensive Youth Camp for children with inhibitors and their
siblings. Children attending the Youth Camp will have the
opportunity to show their parents all that they have learned during
their time at "camp." There is also ample time for networking with
other families and "ask the experts" sessions to interact with
physicians and other key opinion leaders in the field. Since the
Inhibitor Education Summits began in 2005, hundreds of families
have benefited from this unique opportunity to learn and connect
with others who share their experience. "Comprehensive management
of hemophilia with inhibitors is vital for maximizing the quality
of daily life for patients with this difficult condition," said Dr.
Guy Young, Director, Hemostasis and Thrombosis Center, Childrens
Hospital Los Angeles and co-chair of the summits. "The 2009
Inhibitor Education Summits provide patients and their families
with the opportunity to learn effective management strategies,
connect with expert medical professionals, and share experiences
with other families." Dr. Leonard Valentino, Director, RUSH
Hemophilia and Thrombophilia Center, RUSH University Medical
Center, is also co-chair of the summits. For more information about
The Inhibitor Education Summits, log onto
http://www.inhibitorsummits.org/. About the National Hemophilia
Foundation (NHF) 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 has 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). About CBCE(TM) (The Center for
Biomedical Continuing Education) The CBCE(TM) is a full-service
provider of accredited CME/CE with a circular scope of
capabilities. Since 1999, the CBCE has partnered with clinical
experts in solid tumors and hematologic malignancies to develop and
implement local, regional, national and international medical
education initiatives designed to accelerate the adoption of best
practices and clinical breakthroughs in oncology. The CBCE is
dedicated to creating rigorous educational programs at the
forefront of science, customized according to the target audience.
Our unique experience in oncology and hematology has resulted in an
in-depth understanding of the nuanced working lives and learning
styles of the specialists, nurses, and pharmacists involved in
cancer care, an understanding that informs the development of all
interventions. The CBCE vision is to encourage healthcare
professionals to commit to change and to define distinct outcomes
in their practices that will improve patient care and quality of
life. About Novo Nordisk Novo Nordisk is a healthcare company with
an 86-year history of innovation and achievement in diabetes care.
The company has the broadest diabetes product portfolio in the
industry, including the most advanced products within the area of
insulin delivery systems. In addition to diabetes care, Novo
Nordisk has a leading position within areas such as hemostasis
management, growth hormone therapy, and hormone therapy for women.
Novo Nordisk's business is driven by the Triple Bottom Line: a
commitment to economic success, environmental soundness, and social
responsibility to employees and customers. With headquarters in
Denmark, Novo Nordisk employs more than 27,000 employees in 81
countries, and markets its products in 179 countries. Novo
Nordisk's B shares are listed on the stock exchanges in Copenhagen
and London. Its ADRs are listed on the New York Stock Exchange
under the symbol 'NVO'. For global information, visit
novonordisk.com; for United States information, visit
http://www.novonordisk-us.com/. DATASOURCE: Novo Nordisk CONTACT:
Ambre Morley, Novo Nordisk, +1-609-514-8400 Web Site:
http://www.novonordisk-us.com/
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