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Pulmonary Fibrosis Foundation

Rating: 5 stars   24 reviews 1,894

Address:

230 East Ohio Street Suite 304 Chicago IL 60611 USA

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.

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888.733.6741
www.pulmonaryfibrosis.org

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Reviews for Pulmonary Fibrosis Foundation

Role: General Member of the Public
Rating: 5 stars  

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.

 
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Review from #MyGivingStory
Rating: 5 stars  

This group of folks is very supportive and informative. It has been a blessing to me. I have never met any of them. We share with one another and some folks have had that symptom and helps us with info. Most people, drs. Included haven't heard of PF or IPF. I was fortunate to get a very informed dr. He was recommended by the PFf from the group head. Dr. Ganesh Raghu at the University of WA. I was called the very next day. It can be scary if you don't have a good dr. The first one told me I had 2-3yrs. To live. I am in my 11th year.and.....planning for lots more!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

I had the opportunity to learn about the Pulmonary Fibrosis Foundation from its outstanding Chief Operating Officer Patricia Tuomey. The organization serves many purposes including educating the public about this terrible disease, being a support system for those who suffer from it, and advocating for research grants and legislation. I am extremely impressed by the PFF staff and its commitment having worked with them on an organ donation project. The effort by volunteers and people who have pulmonary fibrosis to share their stories with the public is very moving. I would urge anyone who is looking at supporting a charitable organization that makes excellent use of their resources to strongly consider the Pulmonary Fibrosis Foundation. Their work is first-rate.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

I began my journey with the Pulmonary Fibrosis Foundation as a caregiver and family member. We discovered the PFF after my father's battle with this horrible disease ended...but my experience and relationship with this fabulous Foundation was just beginning. Since his passing, I have helped to organize several awareness events and fundraisers...but most notably am proud of have worked with the PFF on their Annual Fundraiser. My husband and I are not millionaires, but we do what we can to support the mission of the PFF. We encourage our friends and family to do the same...and we see our hard-earned dollars going towards raising awareness, support, and ultimately a cure. We are proud to help the PFF in any way we can! And encourage so many others to do the same!

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

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.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

1 person found this review helpful

I was diagnosed with Pulmonary Fibrosis September 2009. It has been a real battle as it is for most of us! The support from the PFF and the people with this disease is unlike any support I have ever seen. Each individual is cared for. If one rejoices we all rejoice and if one mourns we all mourn. We are more than a foundation in my opinion . We are FAMILY! Family that truly cares and works hard to bring awareness and support to all we meet.You are never truly alone when you are in the midst of the members of the Pulmonary Fibrosis Foundation! We laugh and we cry together. We call one another on the telephone send cards to one another and we pray for each other as well as a cure for Pulmonary Fibrosis. The PFF educates us and tells us of any new things we are not aware of. Many people work Very hard to do different jobs within the PFF but its for our common good and welfare! I do not know where I'd be today if it had not been for the support and kindness I have received. I know someone will always be there to help in any way they can and that I can count on these people to carenot just about the disease but for the person and all they go through! They have been a great encouragement for me! Thank you so much! Donna White

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

I was diagnosed in July and the PFF has been there from the beginning and have given me hope and great information. The people are loving and caring. I would recommend it to everyone.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

It was ten days before Christmas when I had an open lung biopsy that brought the diagnosis of Pulmonary Fibrosis. Feeling alone and scared as I read the hits that came up when I Googled it, I felt a sense of reassurance when I found that there was a "Foundation" dedicated to this specific cause. Through them I've been able to connect through social media to a number of other people whose lives have been changed by this dreadful disease. It is heartbreaking when we lose one of our "family" members and we can't help but wonder if we're next. Knowing that the PFF will carry on in research and searching for a cure helps me sleep at night. I know that if my son or grandson should present with this, they'll have more options than I've had. I also believe my mother had been misdiagnosed when she died in 1974. Our symptoms were too eerily familiar. At least I got a correct diagnosis and have benefitted from supplemental oxygen, etc. I can't imagine how lonely and despondent I'd be if I hadn't come across this wonderful Foundation and touched base with the professionals and volunteers on their staff. May God Bless them mightily for their efforts and their commitment to excellence. ((Hugs))

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

I have been priviledged to have had the opportunity to provide HR Consulting support to the Pulmonary Fibrosis Foundation over the past two + years; before which I had never heard of this horrible disease. Exposure to this incredibly professional and dedicated group of individuals as they carry out their personal and organizational mission has been inspiring to say the least. The very genuine care and sensitivity they exude each and every day is remarkable. To a person, this is not a "job", but a passionate cause. I cannot imagine that such commitment will not produce incredible results and ultimately contribute to a cure.

Will you volunteer or donate to this organization beyond what is required of advisors?

Likely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

23 years who suffered from Pulmonary Fibrosis. The foundation helped me see that i wasn't the only one in this world with this awful disease. thanks to them i met so many great people and lost so many. But not one second do i regret doing things for them. Photo shoot, going to the Summit and Annual Dinner. In july 12 i received my Double Lung Transplant and received so much love and support from people i have met through the foundation. Friends and Family. So much love i did a 3mile walk for Pulmonary Fibrosis. The foundation deserves all the love and support you can give. They try their hardest to find a cure,to help one another. they are just awesome!! Love them to heart and they are like my family. thanks to them i am full of love to others..

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

 
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