Idiopathic pulmonary fibrosis (IPF) patients learn from specialists, seek answers about incurable disease
BOSTON, April 30 /PRNewswire-USNewswire/ -- The following announcement was released by The Coalition for Pulmonary Fibrosis:
WHAT: "Living with IPF" Free Educational Seminar for Patients and Their Families
Beth Israel Deaconess Medical Center (BIDMC) in partnership with The Coalition for Pulmonary Fibrosis (CPF), is hosting a free seminar for patients and families living with idiopathic pulmonary fibrosis (IPF), a fatal disease that affects 128,000 Americans and claims as many lives each year as breast cancer (40,000). Incidence and prevalence have grown more than 150 percent in just five years.
The seminar will address:
-- IPF diagnostic strategies
-- current standards of care and research
-- lung transplantation
-- oxygen management
-- pulmonary rehabilitation
-- life management issues
-- resources and support services
Saturday, May 3, 2008
11:00 a.m. - 12 noon Registration and Lunch
12:00 noon - 4:20 p.m. Seminar
Complimentary lunch included
BIDMC West Campus Kennedy Building Auditorium
One Autumn Street (corner of Longwood Avenue and the Riverway)
Parking is available at the Pilgrim Road Garage on the West Campus for $10. Entrance is located off Crossover Street, which can be reached by either Pilgrim Road or Autumn Street.
**DO NOT use the garage adjacent to Bruegger's Bagel off Longwood Avenue.
An interview opportunity with IPF experts and patients who know what
it's like living with this disease, including:
-- IPF patients who live in the Boston area
-- The seminar will feature nationally recognized experts in the treatment
and study of IPF, including Joe Zibrak, MD, Peter LaCamera, MD, David
Roberts, MD, and Sidhu Gangadharan, all from BIDMC and Hilary Goldberg,
MD of Brigham and Women's Hospital
IPF is a progressive and often fatal lung disease characterized by scarring of the lung tissue, eventually robbing patients of their ability to breathe. About 40,000 people will die from IPF this year, the same number as from breast cancer. An estimated 128,000 people in the United States have IPF, and 48,000 new cases are diagnosed each year. There is currently no FDA-approved treatment for IPF, no cure, and two-thirds of patients die within five years of diagnosis.
A recent study conducted by the Coalition for Pulmonary Fibrosis* found IPF awareness is alarmingly low -- less than one-third of Americans polled had heard of IPF, while 88 percent were aware of cystic fibrosis, and 85 percent knew of ALS, or Lou Gehrig's Disease. IPF is several times more common than cystic fibrosis and ALS, yet it receives a fraction of the research funding.
* Respiratory Medicine: Volume 101, Issue 6, June 2007, Pages 1350-1354 Patient experiences with pulmonary fibrosis Collard, Tino, Noble, Shreve, Michaels, Carlson, Schwarz. (http://www.coalitionforpf.org/ofs/pdf/BRQRespiratoryMedicinePaper.pdf)
The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis, while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. For more information, visit http://www.coalitionforpf.org.
Beth Israel Deaconess Medical Center is a patient care, teaching and research affiliate of Harvard Medical School, and consistently ranks among the top four in National Institutes of Health funding among independent hospitals nationwide. BIDMC is clinically affiliated with the Joslin Diabetes Center and is a research partner of Dana-Farber/Harvard Cancer Center. BIDMC is the official hospital of the Boston Red Sox. For more information, visit http://www.bidmc.harvard.edu.
|SOURCE Coalition for Pulmonary Fibrosis|
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