News
Actress Rose McGowan Named Ambassador For Coalition For Pulmonary Fibrosis In Fight Against Disease That Claimed Her Father's Life
December 15, 2011
Actress to Lead New Awareness Campaign, Chair CPF’s Daughters of PF program.
Bi-Partisan Congressional Coalition Reaches Across the Aisle to Introduce the Pulmonary Fibrosis Research Enhancement Act in the U.S. Congress
July 12, 2011
The Pulmonary Fibrosis Foundation (PFF) announced today the re-introduction of the Pulmonary Fibrosis Research Enhancement Act (PFREA). Bi-partisan Lead Sponsors, Senators Christopher Coons (D-DE), Mark Kirk (R-IL), Michael Crapo (R-ID), and Patty Murray (D-WA) and Representatives Erik Paulson (R, MN-3) and Tammy Baldwin (D, WI-2) made the announcement during a press conference from Capitol Hill.
Pulmonary Fibrosis Foundation Partners With Pulmonary Fibrosis Partners
June 06, 2011
True to the Evansville-based organization's name, the Pulmonary Fibrosis Partners has built a partnership with the Pulmonary Fibrosis Foundation with the commonality of the disease Idiopathic Pulmonary Fibrosis (IPF) in mind.
"We are working to raise awareness of the disease with educational symposia and other teaching events and advocating for patients and their families with connections to local and national organizations to apprise them of new medical research and legislative efforts," says Executive Director Shirley Becker. "We are taking action with education and connections where needed, and one of these mutually beneficial connections is with the Pulmonary Fibrosis Foundation."
With complementing missions, the Pulmonary Fibrosis Partners and Pulmonary Fibrosis Foundation are working together to provide mutual support of their respective missions.
At the grassroots level, the Pulmonary Fibrosis Partners' mission is to raise awareness of pulmonary fibrosis and educate, support, and assist our regional community, patients, families and medical professionals in fighting this disease.
At the national level, the Pulmonary Fibrosis Foundation's mission is to help find a cure for idiopathic pulmonary fibrosis (IPF) and advocate for the pulmonary fibrosis community both locally and in Washington, D.C. It, too, promotes disease awareness and provides a compassionate environment for patients and their families locally, where it is based out of Chicago.
"The Foundation will assist in programming and materials for outreach and awareness of the disease," Becker said. "The Foundation has numerous affiliated chapters and associated non-profit organizations. We will be sharing our best practices in coordinating a Pulmonary Fibrosis symposium to raise awareness and educate medical professionals about the disease."
Visit www.pulmonaryfibrosispartners.org for more local information, including educational events and patient support group meetings, and visit www.pulmonaryfibrosis.org for more information about the Foundation and its resources.
Genetic Discovery Published in New England Journal of Medicine Good News/Bad News for Patients, Families with Pulmonary Fibrosis
April 21, 2011
A new discovery in a deadly lung disease may change the direction of research while uncovering increased risk for many patients and families. The Coalition for Pulmonary Fibrosis (CPF) and the Pulmonary Fibrosis Foundation (PFF) applaud the efforts of scientists that led to the discovery of a genetic variation associated with the MUC5B gene which may increase the risk of developing Pulmonary Fibrosis (PF). The two patient organizations partner with National Jewish Health (NJH), which led the team of researchers in the study, on a genetic counseling line that provides medical information and support to patients and families.
First Evidence-based Guidelines on PF
March 16, 2011
The Coalition for Pulmonary Fibrosis (CPF) would like to inform you about the first evidence-based guidelines on PF that were recently published. These guidelines will help physician(s) help patients and will provide the guidance they need to make recommendations for treatment decisions with their patients. Also, the CPF worked with the American Thoracic Society to create a new patient information sheet on PF (linked below), as well.
The guide and information sheet can assist in understanding the options available to patients as well as help patients make the most of visits with their doctors by being as fully informed as possible.
If you are a PF patient, please share the links below with your doctor and consider printing out a copy of the guidelines and a copy of the patient information sheet to provide to your doctor at your next visit.
PF Guidelines (PDF 1.74 MB)
Patient Information Sheet (PDF 724.55 KB)
