Pulmonary Fibrosis Foundation (PFF)

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.

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.

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.

Other program service accomplishmentsresearch: the Pulmonary Fibrosis Foundation (pff) places enormous importance on creating an environment that will assist in the development of effective treatments for Pulmonary Fibrosis (pf). In addition to creating the pff patient registry to provide researchers with data to address specific research questions, we are directly funding pf research through the pff scholars program, developing legislative advocacy efforts, encouraging collaborative relations between industry and academic researchers, delivering key communications to patients, and developing solutions to bridge existing gaps in pf research.the pff scholars program supports projects that offer a high likelihood of improving the understanding of pf in the following research areas: basic science, translational, clinical, epidemiological, and health services. The goal of the pff scholars program is to support emerging investigators to advance research that could translate into successful therapies, while also enabling these promising researchers to obtain independent funding and continue their cutting-edge research. The research review committee administers the peer-review process, which is comprised of 25 credible experts from the us and canada. After their review and recommendations, the pff funded five grants of $100,000 each over a two year period in the 2023 cycle. The pff also considers other smaller grants that fit the research guidelines. Pff care center network (ccn):the Pulmonary Fibrosis Foundation (pff) is dedicated to promoting earlier recognition and diagnosis of Pulmonary Fibrosis and ensuring that patients receive the highest quality healthcare. As part of that commitment, since 2013 the pff has worked with the pf medical community to establish and expand the pff care center network (ccn) to 81 care centers where people with pf can find experienced medical professionals who understand their disease and support services to improve the quality of their lives. The goals of the pff ccn are to deliver state of the art, patient-centered care; to disseminate education to support our patients, caregivers and providers; to give voice to the needs of our community through advocacy and fundraising; and to accelerate research in pf both directly and through collaborations and networking.marketing: the marketing program recorded a total revenue of $418,695, which was comprised of in-kind advertising from a major retailer and two other companies. The pff has designated september as Pulmonary Fibrosis awareness month. The in-kind advertising from a major retailer included regular in-store advertisements across all stores in the united states during the month of september. This advertising was to spread awareness of Pulmonary Fibrosis and the foundation.the Foundation launched the marketing and communications for the pff community registry in july 2022 and reached an enrollment of more than 1,600 enrollees the first year. Our efforts featured email and social media campaigns, development and distribution of print materials, media outreach, and communication with all pff constituencies. We showcased the registry at pff walks across the country and at events with healthcare providers, including chest and ats. During the winter, we held focus groups to develop insights into our messaging and we immediately implemented key learnings. In april, we held a recruitment drive to encourage all eligible participants to enroll. The pff convened eight partner organizations to present the second annual ild day to raise awareness of interstitial lung disease. An educational webinar hosted by internationally recognized ild expert, focused on "progressive Pulmonary Fibrosis: what patients need to know, and provided information to help patients better understand the disease and its progression, its symptoms, and available treatments. Ild day 2022 generated more than 22 million campaign impressions including media relations, social media, digital ads, and traffic to the ild day landing page. Advocacy:the pff engaged policymakers to request increased funding for Pulmonary Fibrosis research and improved access to oxygen for patients. The pff hosted a virtual hill day on february 22, 2023 to provide constituents with the opportunity to meet with their members of congress and raise awareness about the impact of Pulmonary Fibrosis in their lives and the need for research funding. The pff worked with other patient and professional advocacy groups to develop draft oxygen reform legislation and met with congressional offices to start the process of finding sponsors.support groups:the pff support group leader network provides a forum for pf support group leaders to connect, exchange ideas, and share best practices. The pff's support group leader network consists of over 150 support groups across the country. The pff provides an online platform for groups to meet and connect with others across the nation. The pff provides phone-based virtual support groups for members of the pf community who either do not have a local support group or are looking for additional support between their other meetings. There are three groups including a group for general disease education, one for lung transplantation, and one for caregiving. These three support groups meet monthly and to learn more about them visit here: http://bit.ly/pffsupport. In november 2022, the pff hosted a virtual meeting online for volunteers to receive up-to date information on the Foundation, resources available, and training for their roles. The pff provides quarterly training to the pff support group leader network throughout the year.outreach and awareness:the pff ambassador program empowers patients, caregivers, lung transplant recipients, family members, those who have lost a loved one, and health care professionals to serve as spokespeople for the pf community. Comprising a diverse and dynamic group of volunteers from across the united states, pff ambassadors undergo formal training to prepare for speaking and advocating on behalf of the Pulmonary Fibrosis Foundation and the Pulmonary Fibrosis community. Pff ambassadors represent the Foundation as they attend events around the country. Events include pff care center network events, support group meetings, education events, fundraisers, other disease awareness and education programs, and a variety of media opportunities. Pff ambassadors promote disease awareness, provide up-to-date information, and offer hope and inspiration to those affected by Pulmonary Fibrosis. In april 2023, the pff welcomed 13 new pff ambassadors to the program. The pff provides monthly training to pff ambassadors throughout the year. Pff summit : pff summit 2023 is the pff's biennial international health care conference on Pulmonary Fibrosis (pf). The goal of the pff summit is to foster a collaborative environment to improve education and awareness of pf and to identify new approaches to treat, and ultimately cure, this devastating disease. The pff summit featured an innovative continuing medical education (cme) and maintenance of certification (moc) program for health care professionals, researchers, allied health professionals, and industry representatives and offered educational sessions for pf patients and caregivers that address their growing educational needs. During summit 2023, the pff featured a full day session for community pulmonologists and ild fellows, a half-day session for nurses and allied health professionals, 20 different sessions for patients, caregivers, transplant recipients, and those who have lost a loved one, 10 sessions for professionals, and two plenary sessions (all audience) with 128 members of faculty on the roster. (note: some expenses for the pff summit 2023 were included in the 2021 form 990).