Pulmonary Fibrosis Foundation

Pff summit: pff summit 2023 is the pff's biennial international health care conference on pulmonary fibrosis (pf). Total revenue recognized for the pff summit was $1,243,366, which included sponsorships and contributions of $1,157,842 and program service fees of $85,524. 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 2022 form 990).

Research:total revenue recognized for research was $720,426, which is comprised of contributions and sponsorships. 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 six grants of $100,000 each over a two-year period in the 2024 cycle. The pff also considers other smaller grants that fit the parameters of the research guidelines.

Education:the pulmonary fibrosis foundation (pff) is committed to providing quality disease education to the pulmonary fibrosis community. The pff provides patients, caregivers, family members, and health-care providers with resources to more fully understand pf and provides patients with the tools necessary to live with the disease and improve their quality of life.the pff disease education webinar series provides a free way for patients, caregivers, and families to learn from pf specialists on a variety of topics. During fy23-24, the pff disease education webinar series included seven webinars. The pff disease education webinar series topics included: familial pulmonary fibrosis, sleep disorders and pf, emergency preparedness, pulmonary rehabilitation, and more. The pff disease education webinar series hosted over 1,300 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 11,000 views on youtube. In addition to the pff disease education webinar series, the foundation has developed a library of disease education materials. During fy23-24, the pulmonary fibrosis foundation developed the following materials: "understanding pulmonary function tests: a guide for people living with pulmonary fibrosis," "common health research terms: a guide for people living with pulmonary fibrosis," "lung biopsy for interstitial lung disease" fact sheet, and "progressive pulmonary fibrosis and progressive fibrotic interstitial lung disease" fact sheet. Marketing: the marketing program recorded total in-kind revenue of $412,122, which included regular in-store advertisements at a major retailer across all stores in the united states during the month of september, as well as on-line advertising from two other companies. This advertising was to spread awareness of pulmonary fibrosis and the foundation.in early 2023, the foundation launched the marketing and communications for the pff summit. Our efforts featured email and social media campaigns, printed postcards, media outreach, and communication with all pff constituencies. The marketing and awareness efforts resulted in more than 800 healthcare experts, physicians, researchers, patients, caregivers, and industry leaders from 43 states and 16 countries in attendance at the conference. In may, the pff registry reached a milestone of 2,000 enrollees. Surpassing the 2,000-participant milestone during registry recruitment week in april, the pff used social media and email campaigns to reach our audiences, as well as a brand-new landing page on the foundation website, replacing the microsite. The new landing page is easier to navigate, features more patient-friendly messaging, and adheres to pff branding. In september, nine leading patient organizations united to present the fourth annual ild day on september 13, to raise awareness and understanding of interstitial lung disease. An educational webinar, "breathing better with supplemental oxygen was presented to more than 300 attendees and has received over 2,300 views to date.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 and seven clinical associates 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. The ccn brings healthcare providers together to address gaps in care, research and education in pulmonary fibrosis. Corporate partnerships:the pff seeks sponsorships to support its mission-driven activities from patient-service and education programs to research initiatives. During this fiscal year, the pff corporate partnerships team obtained sponsorship to support the pff summit the world's largest conference focused on pulmonary fibrosis and interstitial lung disease research and education, september's pulmonary fibrosis awareness month, the pff education symposium a virtual conference for patients and caregivers focused on disease management, the pff care center network, the pff registry, the pff patient education materials program, the pff support group leaders network, the pff ambassadors program, and the pff disease education webinar series.in 2024, the pff launched the pff corporate committee. Members of the pharmaceutical industry, specialty pharmacy, and other key groups involved in pulmonary fibrosis and interstitial lung disease treatment meet several times annually to discuss the needs of the pf community and identify potential collaborations to help improve the lives of those living with pulmonary fibrosis. Additionally, the pff works with companies to review clinical trial protocols, participate in patient advisory boards, support patient recruitment for clinical trials and market research, and studies evaluating data from the pff registry. 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. 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. Support groups:the pff support group leader network (sgln) provides a forum for pf support group leaders to connect, exchange ideas, and share best practices. The sgln consists of over 130 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. The pff provides quarterly training to the pff support group leader network throughout the year.in october 2023, the pff hosted a virtual meeting online for volunteers, including support group leaders, pff ambassadors, and pff advocates to receive up-to date information on the foundation, resources available, and training for their roles. Outreach and awareness:the pff ambassador program empowers patients, caregivers, lung transplant recipients, family members, and those who have lost a loved one 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 virtually and in-person 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 2024, the pff welcomed 15 new pff ambassadors to the program. The pff provides monthly training to pff ambassadors throughout the year. 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 march 6, 2024, to provide constituents with the opportunity to meet with their members of congress and raise awareness about the impact of pulmonary fibrosis and the need for research funding. The pff worked with other patient and professional advocacy groups to get oxygen reform legislation introduced in the u.s. Congress and met with congressional offices to identify additional sponsors for the legislation.