Pennsylvania IPF Support Network

We help Pennsylvanians living with Idiopathic Pulmonary Fibrosis (IPF)

The goal of the Pennsylvania IPF Patient and Caregiver Support Network is to raise awareness of Idiopathic Pulmonary Fibrosis (IPF) and provide support and education to patients, families, and healthcare providers throughout the Commonwealth of Pennsylvania.

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Learn

What is IPF?

Idiopathic Pulmonary Fibrosis is the progressive scarring of the lungs that occurs when air sacs known as alveoli gradually become replaced by fibrotic tissue or scar tissue. As the scar tissue becomes thicker, it leads to stiffness in the lungs, making it difficult to breathe. Pulmonary fibrosis is found in over 200 lung disorders, so it is important for your health care provider to identify the cause of the fibrosis, because different types of fibrosis respond to different treatments.

About Pennsylvania IPF Patient and Caregiver Support Network

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Who we are

We are a support network dedicated to connecting patients living with IPF, their caregivers, and healthcare providers to each other as well as to important resources and information.

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Why we're here

We know that this is an uncertain, confusing, and overwhelming time. Being able to connect with those who know what you are experiencing and with those who can offer help to ease that uncertainty and offer the comfort and support you seek.

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Who we support

Patients, care partners, and healthcare providers are our primary focus.

Resources

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PFF Care Centers

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Patients and
Care Partners

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Education

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Patient Guide

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Patient Checklist

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Provider Checklist

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Professionals

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Podcast

Stay Up To Date

Latest News

Pulmonary Fibrosis Podcast expands to 5000+ downloads and 79 countries!

The Pulmonary Fibrosis Podcast has expanded from 4000 downloads and 64 countries to 5000+ and 79 countries in just 3 months! Visit our podcast and learn more about pulmonary fibrosis!  

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QUARTERLY EDUCATION SERIES: Tuesday, March 19, 12-1.30 pm ET “WHAT IS THE ROLE OF UNOS AND HOW IS IT INVOLVED IN THE LUNG TRANSPLANT PROCESS” WITH DR. MARIE BUDEV, DO, MPH, FCCP AND UNOS, OPTN LUNG TRANSPLANT CHAIRPERSON

Quarterly Education Series: “What is the role UNOS and how is it involved in the lung transplant process” with Dr. Marie Budev, DO, MPH, FCCP and UNOS (United Network of Organ Sharing), OPTN (Organ Procurement and Transplant Network) Lung Transplant, Committee Chair Time well spent to learn about the role of UNOS! Tuesday, March 19,…

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BREATHE EASY ATS PODCAST: LEVERAGING THE MEDICARE HOSPICE BENEFIT FOR PATIENTS WITH ADVANCED LUNG DISEASE

Co-hosted by Dr. Patricia Fogelman and Jennifer Wescoe, M.Ed., NCC (below written by Dr. Fogelman) Please enjoy our new episode of American Thoracic Society (ATS) Breathe Easy Podcast: Pulmonary-Palliative Care: We Be-LUNG Together. This is an exceptional episode, thanks to our special guest, Dr. Christopher Jones from Duke University Palliative Med!! Listen here: https://breatheeasy.transistor.fm/…/leveraging-the… Title: Leveraging the Medicare Hospice Benefit…

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Get exclusive access to our new podcast

Meet Our Champion

Senator Pat Browne

Senator Browne

Pat Browne

PA State Senator, 16th District (Lehigh County)

Over the years, Senator Browne has been a tireless champion of those living with IPF. He authored the legislation that designated the second week of September as “IPF Research and Awareness Week” in Pennsylvania.

Through our extraordinary advocacy partnership with Senator Browne, over $200,000 of state grants have been secured to promote broader public awareness and deliver education and support to patients, families, and healthcare providers throughout Pennsylvania. His efforts have helped to launch this network!

Sen. Pat Browne represents the 16th Senatorial District (Lehigh County) and serves as Senate Appropriations Committee Chairman. The committee, one of the most powerful of the Senate's standing committees, reviews all legislation for its fiscal impact and plays a crucial role in developing the state budget.

Thank you to Sen. Browne for his advocacy and support of our community through the years!

Stories & Experiences

Brian Zionts-Bernstein

Brian Zionts-Bernstein was diagnosed with interstitial lung disease (ILD) at the age of 42. A lung biopsy later showed that he had idiopathic pulmonary fibrosis (IPF). Brian’s journey is a story of two families--his family and the family who remains anonymous to him, who gave him a second chance at life."

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Want to get in touch? We’d love to hear from you

Data

Facts about IPF

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Affected per year

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New cases per year

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Die from IPF per year

We now have a web app that offers a streamlined experience on your mobile device. Click here to see it!