Patient Groups Collaborate to Co-Sponsor First Fibrosis Across Organs Symposium

Mar 19, 2012, 16:45 ET from Coalition for Pulmonary Fibrosis from ,Pulmonary Fibrosis Foundation

Meeting may spur faster progress in lung, liver, kidney, heart and skin fibrosis; collaboration could drive future treatments and cures

DENVER, March 19, 2012 /PRNewswire-USNewswire/ -- Patient groups applaud first-of-its-kind medical symposium that brought together experts in fibrotic diseases from around the globe to explore the similarities that exist in fibrosis of different organ systems.  The Coalition for Pulmonary Fibrosis (CPF), The Pulmonary Fibrosis Foundation (PFF) and the Hermansky-Pudlak Syndrome Network (HPS Network) co-sponsored the event that was convened by the American Thoracic Society (ATS) March 8-11, 2012.    

Fibrosis can affect the lung, liver, kidney, heart, skin and other areas of the body and claims millions of lives globally.  Most fibrotic diseases are progressive, irreversible and ultimately deadly. These high level discussions, experts believe, will advance the understanding of related fibrotic mechanisms and lead to treatment of fibrotic diseases.  The meeting brought together top scientists, researchers and physicians from academia, clinical practice and industry to identify the shared molecular and physiologic responses operative during tissue injury and repair. More than 60 participants from around the world attended the meeting.

"It was inspiring to be part of this initial collaborative effort between these different specialties, especially as the work to understand lung fibrosis has, as of yet, not produced any approved treatments in the U.S. The hope is that answers may spring from a finding in one or many other organs," said CPF Chief Executive Officer Mishka Michon.  

"We were pleased to see this meeting happen and to support the effort directly," said Dan Rose, M.D., President and CEO of the PFF.  "The level of participation by the doctors in each organ area was extraordinary and they were excited to collaborate with experts in organ areas outside their specialties."

The meeting's objectives were  to set the scientific priorities for future investigations in single organ and cross-organ fibrotic disease, assess the currently available experimental models and their relevance to human health and disease and to identify potential promising therapies for pathologic tissue fibrosis, including idiopathic pulmonary fibrosis (IPF), also referred to as simply pulmonary fibrosis (PF) or lung fibrosis and fibrosis that occurs in the heart, liver, kidney and skin. 

"If fibrosis could be cured by determination, this meeting would be the end of (fibrotic) disease," said  Donna Appell, CEO and Founder of the Hermansky-Pudlak Syndrome Network.  "It is my hope that this meeting inspires many productive areas in fibrosis research."

The meeting was organized by a group of physicians, academic experts and patient advocates, including the meeting's founders, John Tosi, DDS and his wife, Teresa Barnes who chairs the ATS Public Advisory Roundtable (PAR) and is vice president of the CPF.  Other committee  organizers were Kevin Brown, M.D., a pulmonologist at National Jewish Health;  Dennis E. Doherty, M.D., pulmonologist at University of Kentucky and the  Lexington, Kentucky Veteran's Administration (VA) Medical Centers; and Dolly  Kervitsky, RCP, CCRC, an experienced respiratory therapist who is vice president of the PFF.

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).

About the CPF

The CPF is a 501(c)(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 'PF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 24,000 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 the PFF

The mission of the Pulmonary Fibrosis Foundation (PFF) is to help find a cure for idiopathic pulmonary fibrosis (IPF), advocate for the pulmonary fibrosis community both locally and in Washington, DC, promote disease awareness, and provide a compassionate environment for patients and their families. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. December 1-3, 2011 the PFF hosted its first biennial international scientific conference, IPF Summit 2011: From Bench to Bedside, in Chicago; PFF Summit 2013 will be held December 5-7, 2013. For more information visit or call 888-733-6741.

About the HPS Network

The Hermansky-Pudlak Syndrome Network Inc. is a 501(c)(3) organization for people and families dealing with Hermansky-Pudlak Syndrome (HPS). HPS is a genetic type of pulmonary fibrosis and the network is dedicated to support the families and research to find treatment and a cure. For more information, visit

SOURCE Coalition for Pulmonary Fibrosis; Pulmonary Fibrosis Foundation