CPF Joins Doctors to Identify Needs, Gaps and Challenges in Pulmonary Fibrosis Research
Nov. 30, 2012
/PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) participated in a landmark meeting at the National Institutes of Health (NIH)'s National Heart, Lung, and Blood Institute (NHLBI) this week that promises to pave the path forward to finding answers to the deadly lung disease, Pulmonary Fibrosis (PF). The Idiopathic Pulmonary Fibrosis Strategic Planning Workshop, which is the first NIH meeting in 11 years to discuss the state of lung fibrosis research in the U.S., is expected to provide a framework for the NIH's efforts in the disease area and will guide its decisions on research direction.
"We were pleased to be part of this meeting and to join the discussion that will help shape research priorities at NIH," said
, Chief Executive Officer of the Coalition for Pulmonary Fibrosis. "We value participation with the NIH and these renowned researchers and appreciate the importance placed on having the patient and the patient perspective be part of the process."
The meeting brought together researchers from key PF research centers from across the country as well as leaders in the pharmaceutical industry, patient advocacy groups, and federal agencies. The meeting was co-chaired by Dr.
, Professor of Medicine
School of Medicine and Dr.
, Principal Investigator, Center for Immunology and Inflammatory Diseases, Massachusetts General Hospital, Associate Physician, Pulmonary and Critical Unit, Massachusetts General Hospital and Assistant Professor of Medicine,
Harvard Medical School
, Deputy Director of the NHLBI Division of Lung Diseases, told the group the charge of the meeting was to "rethink IPF in new and creative ways" and provide a look at new scientific horizons and new paradigm shifts in the field that need NHLBI leadership. Weinmann encouraged the leaders to "think differently" when making recommendations for the NHLBI's research focus in PF.
"Our work together over these days will help to create the next strategic plan in pulmonary fibrosis research at NIH. We wish to hear from all of the "stakeholders" of this disease during the process of prioritizing, planning and facilitating that research," said Dr.
, a pulmonologist and Program Director of the Lung Fibrosis Research Program at NHLBI who directed the workshop.
PF affects a known 128,000 people in the U.S. and likely has a higher incidence and prevalence than is realized due to misdiagnosis and undiagnosed cases. The disease causes progressive and unrelenting scarring in the lungs that eventually suffocates its victims. As many Americans die from PF each year as die from breast cancer. Transplant is the only known way patients can survive the disease long term and there is no FDA approved therapy for the disease in
the United States
For individuals and organizations interested in supporting future research in Pulmonary Fibrosis, please contact the Coalition for Pulmonary Fibrosis 1(888) 222-8541 or
About the Coalition for Pulmonary Fibrosis
The CPF is a 501C(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 26,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit
or call (888) 222-8541.
About Pulmonary Fibrosis (PF)
Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring – known as fibrosis -- and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 128,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).
SOURCE Coalition for Pulmonary Fibrosis