Navigation Links
Patient Education Summits to Address Special Challenges of Hemophilia Patients and Their Families
Date:8/27/2009

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 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 www.novonordisk-us.com.


'/>"/>
SOURCE Novo Nordisk
Copyright©2009 PR Newswire.
All rights reserved

Related medicine news :

1. Fluctuating eye pressure associated with visual field deterioration in glaucoma patients
2. Comparison of obstetric outcomes between on-call and patients own obstetricians
3. Vision restoration therapy shown to improve brain activity in brain injured patients
4. Diabetes appears to increase risk of death for patients with acute coronary syndromes
5. Ambulatory oxygen rarely a benefit in COPD patients without resting hypoxemia
6. Restricting Blood Flow May Help Heart Bypass Patients
7. Patients with Medicaid and those lacking insurance have higher risk of advanced laryngeal cancer
8. Study provides hope that some transplant patients could live free of antirejection drugs
9. Study provides hope that some transplant patients could live free of anti-rejection drugs
10. Longer ambulance journeys boost death risk for seriously ill patients
11. Expenses Overshadow Optimism for Kidney Failure Patients
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:5/31/2016)... ... May 31, 2016 , ... ... device that enables unprecedented portability and convenience. , The Cube is exceptionally small—it ... in size, the Cube fits easily into any space, whether in a hospital, ...
(Date:5/31/2016)... , ... May 31, 2016 , ... The Global ... today released ten predictions on the future of wellness, travel, spa and beauty in ... travel, spa and beauty companies to leading economists and researchers - to forecast where ...
(Date:5/31/2016)... ... ... The Orthopaedic Research and Education Foundation (OREF) is pleased to announce the following ... term as president in March, succeeding John J. Callaghan, MD, who remains on the ... Kyle, MD, will serve as chair, corporate development, succeeding Thomas P. Schmalzried, MD, in ...
(Date:5/31/2016)... ... May 31, 2016 , ... In a recent interview on The Greenburgh ... New Rochelle, NY-based WVOX (1460 AM), leading medical insurance advocate Adria Goldman ... country’s “modern medical money maelstrom.” , During the interview with Mr. Feiner that ...
(Date:5/31/2016)... ... May 31, 2016 , ... To ... solutions to the healthcare industry, The University of Scranton is adding a Certificate ... path to a career in rapidly growing field of healthcare information. , ...
Breaking Medicine News(10 mins):
(Date:5/31/2016)... JACKSON, Mich. , May 31, 2016 /PRNewswire/ ... a market-leading provider of anesthesia information management systems ... Doug Marcey as Vice President of ... establish and lead all aspects of the company,s ... and Plexus TG customers to determine the expansion ...
(Date:5/31/2016)... May 31, 2016 Aloe vera ... food, cosmetics and pharmaceuticals, with global volume to surpass ... 1.6 Bn. Demand for aloe vera extracts ... yogurts will continue its upward momentum in 2016 as ... boost positive sentiment on aloe vera, with wide-ranging applications ...
(Date:5/31/2016)... NESS ZIONA, Israel , ... a regenerative medicine company utilizing its proprietary plant-based rhCollagen ... has received authorization from the Chief Scientist of ... approximately 50% of its NIS 12 million development project ... million, measurably higher than last year,s authorized grant, which ...
Breaking Medicine Technology: