The Pulmonary Fibrosis Foundation (PFF) is a 501(c)(3) nonprofit organization focused on fighting pulmonary fibrosis (PF). But how did it all start? The brothers Albert Rose and Michael Rosenzweigh, PhD, watched their sister suffer from the rare lung condition, and they ended up being diagnosed with it as well, which made them take action.
“The brothers experienced firsthand the devastating effects of PF when their sister Claire passed away from the disease. Both brothers were also diagnosed with PF, and it was their vision and dedication that led to the creation of the Foundation,” explain the PFF. The burden of the disease impacted the whole family, impelling them to create the organization, which was founded in 2000.
“By actively engaging the PF community, the Pulmonary Fibrosis Foundation has developed essential programs available to those living and working with pulmonary fibrosis.” Ever since its formation, the Pulmonary Fibrosis Foundation has been proactive in helping the PF community, with the main purposes of supporting the development of effective treatments and ultimately finding a cure for PF, as well as providing support to everyone living with the disease.
The foundation is determined to pursue these goals through programs such as the PFF Care Center Network, the PFF Patient Registry, the PFF Patient Communication Center, the PFF Ambassador Program, an international network of support groups and online communities, the PFF Summit, and comprehensive disease education materials.
“Our expert Medical Advisory Board and the biennial PFF Summit allow us to maintain an ongoing dialogue with physicians, researchers, industry representatives, and the patient community. This creates a collaborative environment that will help us achieve many of our goals. Our peer-reviewed research program supports projects that improve understanding of pulmonary fibrosis and will lead to successful therapies.”
In addition to interacting with patients, loved ones, caregivers, physicians, and investigators, the PFF has also established partnerships with industry players. These partnerships are meant to support work done by the foundation in fostering research projects focused on improving the understanding of pulmonary fibrosis and that are expected to lead to new treatments, through its peer-reviewed research programs.
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