"There is no known cause and no FDA-approved treatments for pulmonary fibrosis, yet research funding has remained stagnant," Senator Crapo said. "This legislation is an important first step to understanding the nature of IPF and finding treatment options to a disease for which there is no known cure." 

"Unfortunately, we know little about pulmonary fibrosis, a debilitating and deadly disease that takes the lives of thousands of Americans each year.  This legislation is critical to increasing our understanding of IPF and to finding treatment options and, potentially, a cure.  I look forward to working with my colleagues in both chambers and on both sides of the aisle on this important bill," said Congresswoman Baldwin. 

The PFREA also calls for establishment of a National PF Advisory Board, which would make recommendations to the NIH and CDC concerning the structure and management of a PF patient registry.  The goal of the registry would be to improve understanding of the cause and progression of PF, improve standards of care, accelerate research and find ways for new therapies to be developed sooner.

Now in its 10th year, the CPF has been leading a national advocacy effort focused on the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) to increase research funding for PF and accelerate efforts to find a cure for this devastating lung disorder for several years.  The CPF annually convenes a National PF Awareness Week which brings patients and patient advocates to Capitol Hill to meet with Members of Congress and their staffs.  This year, National PF Awareness Week will be held September 18-24.

SOURCE Coalition for Pulmonary Fibrosis