Pulmonary Fibrosis Foundation: From a Family Idea to a 14-year Support Organization
Founded in 2000, the Pulmonary Fibrosis Foundation (PFF) is a nonprofit organization dedicated to supporting research on the treatment of pulmonary fibrosis (PF) and finding a cure for the disease, as well as assisting patients and their families. The organization engages with local and regional PF communities all over the country, offering educational programs to those living and working with pulmonary fibrosis.
PFF was founded by the two brothers Albert Rose and Michael Rosenzweig, PhD, who experienced the effects of the life-threatening disease firsthand when their sister Claire died from pulmonary fibrosis, and decided to do something to support others who were suffering in the same way. Both brothers were diagnosed with the disease as well, and as PF afflicted the entire family, it was their vision and dedication that led to the creation of the organization to help others.
In order to build a trusted recourse for patients suffering from pulmonary fibrosis, as well as their families and caregivers, the Pulmonary Fibrosis Foundation offers a series of programs, including a care center network, a PFF patient registry, a PFF patient communication center, PFF Ambassador Program, an international network of support groups and online communities, the PFF Summit, as well as comprehensive disease education materials.
The biennial PFF Summit is one of the main events organized by the expert medical advisory board of the foundation. During the event, physicians, researchers, industry representatives, and the patient community all dedicate their time to dialogue with each other about the latest news regarding the disease, creating a collaborative environment in order to contribute to the foundation’s goals of supporting research on PF.
The foundation supports research projects willing to improve the understanding of pulmonary fibrosis and that are expected to lead to new treatments, through its peer-reviewed research programs. Therefore, the PFF has also established several agreements with with industry partners.