Pulmonary Fibrosis Foundation

Programs: Pff patient registry: the pff patient registry is a collaborative effort that will bring together multiple stakeholders including patients, health care providers, and researchers. The registry is an electronic database of patient information that will be de-identified (made anonymous) and independently managed by a data-coordinating center. The goals of the pff patient registry are to provide a robust dataset of clinical and quality of life (qol) data on the full spectrum of pulmonary fibrosis patients, help shape and improve clinical care patterns to advance patient outcomes, serve as an invaluable tool in support of research to improve qol and outcomes and to aid awareness of and enrollment into clinical trials.

pff care center network:the goal of the pff care care center network is to elevate the standard of care for patients with pulmonary fibrosis. The pff care center network connects leading medical centers throughout the us that have expertise in treating fibrotic lung diseases. The institutions that comprise the network use a multidisciplinary approach to deliver comprehensive patient care. These specialized care teams include individuals with expertise in pulmonary medicine, rheumatology, radiology, pathology, gastroenterology, and thoracic surgery. This multipronged, collaborative approach is critical to managing a complex disease like pulmonary fibrosis and ensuring individuals receive an accurate diagnosis, obtain quality clinical care, and acquire important support services.

research: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). We are developing this environment by directly funding research, promoting advocacy efforts, encouraging collaborative relations between industry and academic researchers and developing solutions to bridge existing gaps in pf research. The pff research fund supports projects that offer a high likelihood of improving the understanding of pf in the following areas: basic science, translational science, clinical medicine/research and social science/quality of life. The pff research advisory committee administers the peer-reviewed process which funds multiple grants including four $50,000 grants per grant cycle.

1 outreach and awarenesspff ambassador program-the pff ambassador program empowers patients, caregivers, and health care professionals as spokespersons for the pf community on behalf of the pff. Pff ambassadors promote disease awareness, provide up-to-date information, and offer hope and inspiration to those affected by pulmonary fibrosis. Pff ambassadors are available to speak at pff care center network events, support group meetings, fundraising events, and other disease awareness and education programs. Pff disease education webinar series-the pff disease education webinar series engages the pf community in an online webinar discussion where they learn from, connect with, and pose questions to leading pulmonary fibrosis specialists each month. Ten webinars were presented in 2014 and all can be viewed on the pff website at www. Pulmonaryfibrosis. Org/webinars. Global pulmonary fibrosis awareness month-the pf community unites during global pulmonary fibrosis awareness month as a collective voice to enhance disease awareness and provide outreach to those in need. In 2014 the entire pf community joined the pff and participated in the #blueup4pf campaign, attended educational events, hosted team pff fundraising events, participated in webinars and spread disease awareness through social media. In chicago, the pff kicked off the month with mayor rahm emanuel proclaiming september global pulmonary fibrosis awareness month. 2 pff patient communication center (pcc)launched in 2014, the pcc serves as the central information hub for pulmonary fibrosis patients, caregivers, and health care professionals. The pcc staff answers questions and provides information that is tailored to individuals' needs. Resources available to callers include: information about pulmonary fibrosis; how to find medical care, access support services, obtain available treatments, and enroll in clinical trials; pff patient education and advocacy materials; and information on pff programs and services. 3 patient and physician education: the pulmonary fibrosis foundation 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 to provide patients with the tools necessary to live with the disease and improve their quality of life. The foundation's suite of printed educational materials for physicians, patients, and caregivers includes: the pff patient information guide, pff physician notepad, pff disease awareness brochure, and pff disease awareness poster. The pulmonary fibrosis foundation's educational materials are distributed by the pff patient communication center and the support group leader network (see support group section). The foundation also facilitates physician education by attending and providing funding support for educational conferences. 4 pff summit:pff summit 2015: from bench to bedside is the pff's biennial international health care conference on pulmonary fibrosis (pf). The goal of the 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 summit features an innovative continuing medical education (cme) program for health care professionals and sessions for pf patients and caregivers that address their growing educational needs. {note: the majority of expenses for the pff summit 2015 will be included on the 2015 990. 5 support groups:support group leader network-the pff support group leader network provides a forum for pf support group leaders to connect, exchange ideas, and share best practices. The leanne storch support group fund further enhances the support group experience and assists the needs of the network by funding educational events, helping establish new groups, and supporting related activities. In 2014 the pff awarded 18 leanne storch support group fund grants. Online support group communities-online support groups are a great way for patients, caregivers, family members, and friends to virtually connect for support and information. For those who are unable to attend an in-person group, or simply want additional interactions between meetings, the pulmonary fibrosis foundation offers two online support communities: inspire and rareconnect. Visit http://www. Pulmonaryfibrosis. Org/life-with-pf/support-groups/online-support-communities to learn more. 6 advocacy:in 2014 the pff launched an independent pf patient and caregiver survey to collect essential insights about living with the disease and presented the initial results to the us food and drug administration at its public meeting on idiopathic pulmonary fibrosis (ipf) patient-focused drug development. The purpose of the meeting was to obtain a better understanding of how ipf patients and caregivers cope with symptoms, the impact of the disease on their daily lives, and to learn more about their views on current treatment approaches.