Member Spotlight: Pulmonary Fibrosis Foundation

Thursday, June 13, 2019

By Kelly Garrity, Senior Director, Membership Services and Development

The Pulmonary Fibrosis Foundation (PFF) serves as the leading patient advocacy organization dedicated to identifying effective pulmonary fibrosis (PF) treatments and assisting those living with the disease. The PFF mobilizes people and resources to provide access to high quality care and lead research for a cure so people with PF will live longer, healthier lives.

By actively engaging the patient community, the PFF has developed essential programs available to those living and working with PF. Community programs include the PFF Care Center Network, the PFF Patient Registry, the Patient Communication Center, the PFF Ambassador program, newly created Oxygen Information Line, as well as an international network of support groups and online communities.

The PFF has developed significant relationships with industry partners and continues to uphold their position as the honest broker to inform those affected by pulmonary fibrosis of important scientific breakthroughs. Their peer-reviewed research program supports projects that improve understanding of pulmonary fibrosis, and their expert medical committees coupled with the biennial PFF Summit allows them to maintain an ongoing dialogue with the patient community, physicians, nurses, pharmacists, allied health care professionals, researchers, and industry representatives.

The PFF is a member of the NHC because the PFF appreciates the shared patient commitment by the overall NHC membership and the opportunity to engage with these organizations in a structured way surrounding policy issues and shared best practices. The PFF believes the NHC’s Standards of Excellence provides an added layer of guidance to ensure they maintain good governance and continue to support their constituents by striving to be the best PF patient advocacy organization.

For more information on becoming an NHC member, email me.