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Pulmonary Fibrosis Foundation

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Nonprofit Overview

Causes: Health, Lung Diseases, Unknown

Mission: The mission of the Pulmonary Fibrosis Foundation (PFF) is to help find a cure for idiopathic pulmonary fibrosis (IPF), advocate for the pulmonary fibrosis community, promote disease awareness, and provide a compassionate environment for patients and their families.

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.

Community Stories

7 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

Why I give to the Pulmonary Fibrosis Foundation. 12 years ago my mom was diagnosed with a disease we had not heard of - Idiopathic Pulmonary Fibrosis - a 100% fatal lung disease with no treatment and no cure. The PFF (www.pulmonaryfibrosis.org) is working every day to find a cure, while helping the PF community at the same time. In honor of my mom, Beverly Hart, and all those affected with PF, I give to the PFF to help with their mission because they care enough to go the extra mile for all affected by this killer disease. I don't stop at giving money. I also give of my time. I have become a PF Advocate for Patients and Families and operate multiple online support groups in Yahoo Groups and on Facebook. With my Breathe Support Network of Groups my goal is to ensure that patients, their families, and their friends do not have to walk the PF journey alone. PF is still widely unknown - even in the medical community. Mom and I walked alone for most of the 6 years she was alive after diagnosis. I vowed on the night she died that I would do everything I could to ensure others are not alone. I will continue my fight against PF and I will continue helping others until my last breath.

Review from #MyGivingStory

Ann-Marie Thunell

General Member of the Public

Rating: 5

Hello from Sweden, I was diagnosed with IPF 9 years ago at the age of 44. I've spent many years struggling on my own - and was so happy when I came across PFF. It gives me a lot of inspiration , I follow every move you make on Facebook. It is a shame I didn't know about PFF last year or I would have come to the summit in chicago, but hopefully I will come to next years summit. Keep up the good work, regards from Stockholm.

Gale B.

General Member of the Public

Rating: 5

Gale 57 Idiopathic Pulmonary Fibrosis is a horrible disease. In 2009 I went from one day a very active person to the next day unable to do dishes without having to sit down & rest. I am now starting to cough alot to only bring up a paste like substance from my lungs. I have read some of the reviews here & it is heart breaking that there are no federal funding to find a cure for a disease that kills as many as breast cancer every year !!! My advice don't take anything for granted in this life & if your able to something to help get the awareness out of this disease, "Do it" contact your local & state Representative's tell them you think there should be funding for this. I may not live to reap the rewards but you/your child/or grand child may...If you don't feel you can do any of this please pray for a cure..God Bless ...

Erin34

General Member of the Public

Rating: 5

My husband passed away in 2008 of Idiopathic Pulmonary Fibrosis. At the time, I had never heard of the disease. I didn't know who to ask or where to go to get information. This year I discovered PFF on Facebook and was so thrilled and sad at the same time. I was able to find out information on this disease and for the first time since my husband passed away, I was able to get peace. I was no longer alone.

1

General Member of the Public

Rating: 5

The Pulmonary Fibrosis Foundation is an excellent organization that serves patients and their families across the US (and even across the globe!). Idiopathic pulmonary fibrosis (IPF) is a terrible disease, and to know that there is group dedicated to fighting it offers comfort during the bleak time after a diagnosis. I encourage everyone affected by IPF (patients, family members, and friends) to 'like' this group on Facebook or reach out to The PFF in some way because the support and information they provide is absolutely phenomenal. Thank you Pulmonary Fibrosis Foundation for all that you do!!!

General Member of the Public

Rating: 5

When my mother was diagnosed with idiopathic pulmonary fibrosis, I had never heard of the disease before. Soon thereafter, a family friend was also diagnosed, and eventually the son of the family friend was diagnosed. Watching someone you love live with fear in their eyes every single day as they grasp for breath, change from an extremely active healthy person to one that cannot carry dishes from the kitchen to the dining room, and spend hours everyday trying to cough a paste-like substance out of their lungs, to the point of exhaustion, is something I would not wish on anyone. While it impacts so many people, including most recently my boss's father, I am continuously surprised at how few people know about this devastating illness. When we were looking for information, a support system, or a resource we could not find one at the time. It is imperative that the Pulmonary Fibrosis Foundation have more attention and funding to help our loved ones and their families when they are faced with this disease.

Elaine11

General Member of the Public

Rating: 5

My Sister was diagnosed with this horrible disease and am praying for her and The Pulmonary Fibrosis Foundation. We need a cure!!! PFF is helping more people aware of this little known disease. Thank you Pulmonary Fibrosis Foundation for all you do!!!