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.
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
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.
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.
Who we support
Patients, care partners, and healthcare providers are our primary focus.
Stay Up To Date
Latest News
Wescoe Walk for Pulmonary Fibrosis 2023 – a beautiful day to raise awareness for pulmonary fibrosis!
Thank you to everyone who joined us the last Saturday October 28th, for the 18th Annual Wescoe Walk for Pulmonary Fibrosis! This walk started to honor the life of Ron Wescoe, beloved father and coach who passed from Pulmonary Fibrosis in 2004, and has grown to honor anyone who has been impacted or might be…
Patient Organization Symposium 2023 – Frankfurt, Germany
Patient Organization Symposium 2023 – Frankfurt, Germany It was a tremendous opportunity to connect with incredible patient advocacy organizations around the world! We truly speak the same language, I am humbled by the tenacity, drive and sheer passion we all have for the patient and care partner voice. Thank you so much to Ms. Robina…
PCORI 2023 Annual Meeting in Washington, D.C.
PCORI Annual Meeting 2023 in Washington, D.C. – “Engaging Stakeholder to Design a Curriculum for Community Education About Patient-Engaged Research” Dr. Ilene Hollin shares our impactful work at the PCORI 2023 Annual Meeting! A 2 year project that lends to educating the pulmonary fibrosis community about patient-engaged research. A pioneering and innovative project we have…
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Meet Our Champion
Senator Pat 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."
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
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