Dr Jeffrey Swigris and Scott Staszak discuss how patient advocacy at the Pulmonary Fibrosis Foundation is transforming IPF care and research.
Relevant disclosures can be found with the episode show notes on Medscape https://www.medscape.com/viewarticle/999861. The topics and discussions are planned, produced, and reviewed independently of advertisers. This podcast is intended only for US healthcare professionals.
Resources
Pulmonary Fibrosis Foundation https://www.pulmonaryfibrosis.org/
Managing Cough in Idiopathic Pulmonary Fibrosis https://pubmed.ncbi.nlm.nih.gov/34171385/
PFF Help Center https://www.pulmonaryfibrosis.org/patients-caregivers/medical-and-support-resources/pff-help-center
PFF Scholars https://www.pulmonaryfibrosis.org/researchers-healthcare-providers/research-opportunities/scholars
PFF Registry https://www.pulmonaryfibrosis.org/pff-registry/pff-patient-registry
The Pulmonary Fibrosis Foundation Patient Registry. Rationale, Design, and Methods https://pubmed.ncbi.nlm.nih.gov/32776789/
Circulating Biomarker Analyses in a Longitudinal Cohort of Patients With IPF https://pubmed.ncbi.nlm.nih.gov/38226605/
PFF Community Registry https://www.pulmonaryfibrosis.org/pff-registry/community
Supplemental Oxygen Access Reform https://www.congress.gov/bill/118th-congress/senate-bill/3821
NHLBI Idiopathic Pulmonary Fibrosis Research https://www.nhlbi.nih.gov/research/idiopathic-pulmonary-fibrosis
Department of Defense Basic Research Directorate https://basicresearch.defense.gov/
PFF Become an Advocate https://www.pulmonaryfibrosis.org/advocacy
