PULMONARY FIBROSIS FOUNDATION
Programs
PFF Registry Program
PFF REGISTRY: THE PFF REGISTRY PROGRAM RECORDED A TOTAL REVENUE OF $3,260,239, ENCOMPASSING CONTRIBUTIONS AND SPONSORSHIPS AMOUNTING TO $246,160 AND PROGRAM SERVICE REVENUE TOTALING $3,014,079. THIS INITIATIVE SERVES AS A COLLABORATIVE RESEARCH ENDEAVOR, UNITING VARIOUS STAKEHOLDERS SUCH AS PATIENTS, CAREGIVERS, FAMILY MEMBERS, HEALTHCARE PROVIDERS, AND RESEARCHERS WITH THE GOAL OF ADVANCING RESEARCH AND ENHANCING THE QUALITY OF LIFE FOR INDIVIDUALS AFFECTED BY PULMONARY FIBROSIS (PF) AND INTERSTITIAL LUNG DISEASE (ILD).THE GOALS OF THE REGISTRY INCLUDE: -ESTABLISH A COMPREHENSIVE INFORMATION SOURCE TO ASSIST RESEARCHERS IN ADDRESSING DIAGNOSTIC, TREATMENT, AND POTENTIAL CURE-RELATED QUERIES. -PROVIDE A DATASET ENABLING RESEARCHERS TO ENHANCE THE QUALITY OF CARE IN US-BASED MEDICAL PRACTICES. -UTILIZE INFORMATION TO SUPPORT LEGISLATIVE AND ADVOCACY INITIATIVES. -ENGAGE THE PF AND ILD COMMUNITIES.THE REGISTRY INCLUDES TWO DISTINCT REGISTRIES:-THE PFF PATIENT REGISTRY GATHERED PHYSICIAN-REPORTED MEDICAL INFORMATION TWICE A YEAR FROM OVER 2000 PATIENTS RECEIVING CARE AT 42 PARTICIPATING PFF CARE CENTERS ACROSS THE UNITED STATES FROM 2016 TO 2022.-THE PFF COMMUNITY REGISTRY LAUNCHED IN JULY 2022 AND RELIES ON SELF-REPORTED INFORMATION SUBMITTED BY PATIENTS, LUNG TRANSPLANT RECIPIENTS DIAGNOSED WITH PF OR ILD, AS WELL AS THEIR CAREGIVERS AND BIOLOGICAL FAMILY MEMBERS.TOGETHER, THESE REGISTRIES COMPILE DATA IN AN ELECTRONIC DATABASE COVERING PATIENT DIAGNOSIS, MEDICAL HISTORY, TREATMENT, QUALITY OF LIFE, AS WELL AS MEDICAL AND FAMILY HISTORY FROM CAREGIVERS AND FAMILY MEMBERS. THE COLLECTED DATA ARE ANONYMIZED AND INDEPENDENTLY MANAGED BY A DATA COORDINATING CENTER. FURTHERMORE, THE PATIENT REGISTRY OBTAINED BLOOD SAMPLES WITH PATIENT CONSENT, WHICH WERE THEN ANONYMIZED AND INDEPENDENTLY MANAGED BY A MEDICAL SPECIMEN STORAGE FACILITY ASSOCIATED WITH THE DATA COORDINATING CENTER.CURRENTLY, 54 RESEARCH PROJECTS HAVE BEEN COMPLETED OR ARE UNDERWAY USING CLINICAL DATA AND SOME UTILIZED BIOSAMPLES AND/OR HRCT SCANS FROM THE PATIENT REGISTRY. MOST OF THESE STUDIES ARE CLINICAL IN NATURE, BUT BASIC/TRANSLATIONAL PROJECTS AND PATIENT-CENTERED RESEARCH ALSO ARE WELL REPRESENTED.TO LEARN MORE ABOUT THE PFF REGISTRY, VISIT: PFFREGISTRY.ORG.GeographiesNot indicatedDatesJul 1, 2022 – Jun 30, 2023Source990No causes providedNo populations provided–$2.7MPFF Patient Registry and Awareness Initiatives
CORPORATE PARTNERSHIPS: TOTAL REVENUE RECOGNIZED FOR CORPORATE PARTNERSHIPS WAS $991,617, WHICH INCLUDED CONTRIBUTIONS AND SPONSORSHIPS OF $112,510, IN ADDITION TO THE PROGRAM SERVICE REVENUE OF $879,107.PFF SEEKS SPONSORSHIPS TO SUPPORT ITS MISSION-DRIVEN ACTIVITIES FROM PATIENT-SERVICE AND EDUCATION PROGRAMS TO THE PFF PATIENT REGISTRY, TO PULMONARY FIBROSIS AWARENESS MONTH IN SEPTEMBER, AND THE PFF SUMMIT, THE WORLD'S LARGEST CONFERENCE FOCUSED ON PULMONARY FIBROSIS AND INTERSTITIAL LUNG DISEASE RESEARCH AND EDUCATION. ADDITIONALLY, PFF WORKS WITH RESEARCH COMPANIES TO SUPPORT PROTOCOL REVIEW, RECRUITMENT EFFORTS AND HELP ENSURE THAT THE PATIENT VOICE IS INCLUDED THROUGHOUT THE DRUG DISCOVERY PROCESS. THE PROGNOSTIC LUNG FIBROSIS CONSORTIUM (PROLIFIC) CONVENES QUARTERLY THROUGHOUT THE FISCAL YEAR TO REVIEW THE RESULTS OF THE BIOMARKER ANALYSIS AND SUBMIT THE FINDINGS FOR PUBLICATION. A BUDGET HAS BEEN APPROVED TO TEST ADDITIONAL COHORTS FOR COMPARATIVE ANALYSIS IN THE COMING YEAR. PROLIFIC IS A CONSORTIUM OF COMPANIES AND FOUNDATIONS DEVELOPING TESTS TO IDENTIFY IMPORTANT MARKERS FOR PULMONARY FIBROSIS (PF). TWELVE INITIAL BIOMARKERS WERE SELECTED FOR THEIR POTENTIAL TO PREDICT DISEASE COURSE OF PF AND TO ASSESS HOW WELL A DRUG WILL WORK IN A SPECIFIC INDIVIDUAL. FINDINGS WILL BE USED TO INFORM AND COMPARE RESULTS ACROSS DIFFERENT CLINICAL TRIALS TO EXPEDITE REGULATORY APPROVAL OF NEW DRUGS. THE PFF IS ENGAGED IN A MULTI-YEAR FEDERALLY FUNDED RESEARCH COLLABORATION CALLED PRECISIONS, WHICH IS LAYING THE FOUNDATION FOR PERSONALIZED MEDICINE IN PF. BIOMARKERS BIOLOGICAL MOLECULES FOUND IN BLOOD THAT CONVEY INFORMATION ABOUT DISEASE STATUS PLAY A CRITICAL ROLE IN PRECISIONS. THIS AMBITIOUS CLINICAL TRIAL IS THE FIRST EVER TO APPLY THE PRINCIPLES OF PRECISION MEDICINE TO THE DIAGNOSIS AND TREATMENT OF INTERSTITIAL PULMONARY FIBROSIS (IPF). DATA AND BLOOD FROM THE PFF REGISTRY ARE BEING USED IN THE STUDY TO HELP RAPIDLY IDENTIFY CLINICAL TRIAL PARTICIPANTS WHO ARE ELIGIBLE FOR THE STUDY. PRECISIONS HAS MET ITS STUDY RECRUITMENT GOAL AND WILL CONTINUE COLLECTING FOLLOW-UP DATA FROM THOSE ENROLLED.GeographiesNot indicatedDatesJul 1, 2022 – Jun 30, 2023Source990No causes providedNo populations provided–$1.1MPFF Disease Education Programs
EDUCATION:THE PULMONARY FIBROSIS FOUNDATION (PFF) IS COMMITTED TO PROVIDING QUALITY DISEASE EDUCATION TO THE PULMONARY FIBROSIS COMMUNITY. THE PFF STRIVES TO PROVIDE PATIENTS, CAREGIVERS, FAMILY MEMBERS, AND HEALTH CARE PROVIDERS WITH THE RESOURCES NECESSARY TO MORE FULLY UNDERSTAND PF AND ITS IMPACT AS WELL AS PROVIDE PATIENTS WITH THE TOOLS NECESSARY TO LIVE WITH THE DISEASE AND IMPROVE THEIR QUALITY OF LIFE.IN NOVEMBER 2022, THE PFF INTRODUCED THE PFF EDUCATION SYMPOSIUM, A VIRTUAL CONFERENCE FOR PATIENTS, CAREGIVERS, AND FAMILIES THAT PROVIDED DISEASE EDUCATION AND NETWORKING OPPORTUNITIES.THE PFF DISEASE EDUCATION WEBINAR SERIES HAS SERVED AS AN ESSENTIAL PROGRAM TO ADVANCE OUR MISSION OF EDUCATING THE PF COMMUNITY. THE WEBINAR SERIES PROVIDES A FREE, CONVENIENT WAY FOR PATIENTS, CAREGIVERS, AND FAMILIES TO LEARN FROM AND CONNECT WITH PF SPECIALISTS ON A VARIETY OF IMPORTANT TOPICS. DURING FY22-23, THE PFF DISEASE EDUCATION WEBINAR SERIES HOSTED SEVEN WEBINARS ALONG WITH AN ADDITIONAL WEBINAR IN CONJUNCTION WITH THE AMERICAN THORACIC SOCIETY PUBLIC ADVISORY ROUNDTABLE. THE PFF DISEASE EDUCATION WEBINAR SERIES TOPICS INCLUDED: MANAGING COMORBIDITIES, CLINICAL TRIALS, PULMONARY HYPERTENSION AND INTERSTITIAL LUNG DISEASE, DISEASE PROGRESSION, AND MORE. THE PFF DISEASE EDUCATION WEBINAR SERIES HOSTED OVER 1,200 LIVE ATTENDEES. WEBINARS ARE RECORDED AND AVAILABLE FOR VIEWING ON BOTH THE PULMONARY FIBROSIS FOUNDATION WEBSITE AND YOUTUBE CHANNEL. WEBINARS FROM THE PFF DISEASE EDUCATION WEBINAR SERIES FROM THIS TIMEFRAME HAVE AMASSED OVER 39,000 VIEWS ON YOUTUBE ALONE. IN ADDITION TO THE PFF DISEASE EDUCATION WEBINAR SERIES, THE FOUNDATION HAS DEVELOPED A LIBRARY OF DISEASE EDUCATION MATERIALS FOR PULMONARY FIBROSIS PATIENTS, CAREGIVERS, FAMILY MEMBERS, AND FRIENDS. DURING FY22-23, THE PULMONARY FIBROSIS FOUNDATION DEVELOPED THE FOLLOWING MATERIALS: "SYMPTOM MANAGEMENT FOR PF: HOW PALLIATIVE CARE CAN IMPROVE QUALITY OF LIFE," "CAREGIVING: A GUIDE FOR FAMILY AND FRIENDS," "INTERSTITIAL PNEUMONIA WITH AUTOIMMUNE FEATURES" FACT SHEET, "POST COVID-19 INTERSTITIAL LUNG DISEASE" FACT SHEET, "MOLD-RELATED HYPERSENSITIVITY PNEUMONITIS" FACT SHEET, "TREPROSTINIL" FACT SHEET, "MOLD REMEDIATION" FACT SHEET, AND "TOCILIZUMAB" FACT SHEET. ADDITIONALLY, THE PFF CONTINUED TO TRANSLATE MATERIALS INTO SPANISH.GeographiesNot indicatedDatesJul 1, 2022 – Jun 30, 2023Source990No causes providedNo populations provided–$976K
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