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    Campaign aims to increase global awareness of IPF


    Healthcare providers, celebrities, patients and others are helping to increase awareness of idiopathic pulmonary fibrosis (IPF) during the Pulmonary Fibrosis Foundation’s (PFF) Pulmonary Fibrosis Awareness Month.

    Related: New study highlights benefits of nintedanib in IPF treatment

    “We dedicate the month of September to help shine a spotlight on doing something to eradicate pulmonary fibrosis, while directing resources critical to those living with the disease,” said Patti Tuomey, president and CEO of the Pulmonary Fibrosis Foundation (PFF).

    The PFF campaign aims increase global awareness of pulmonary fibrosis (PF), a devastating and relentlessly progressive disease that causes scarring in the lungs and is generally fatal within 2 to 3 years of diagnosis. The PFF’s activities during the month focus on supporting disease education for patients, family members and professionals in the PF community and raising funds to support ongoing research.

    Related: IPF patients struggle with quality-of-life issues

    PFF's US patient survey is being conducted to advance understanding of patients' diagnostic experiences with interstitial lung diseases (ILDs), including idiopathic pulmonary fibrosis (IPF). The Interstitial Lung Disease Patient Journey (INTENSITY) survey will assess the steps and time required for patients to receive a diagnosis, specific obstacles hindering timely diagnosis and the physical and emotional impact of patients' diagnostic journey.

    Gregory P Cosgrove MDDr Cosgrove"IPF and other ILDs are notoriously difficult to diagnose, leading to treatment delays, added healthcare costs and significant emotional impact for patients and caregivers," said Gregory P. Cosgrove, MD, chief medical officer of the PFF. "Results from the INTENSITY survey will help us more fully understand patients' diagnostic experiences so that we can further our efforts among all stakeholders to improve timely diagnosis and treatment of this disease. This ability is more critical than ever, given the recent availability of treatments that can slow progression of IPF."

    Meanwhile, some of the important activities for PFF Global Pulmonary Fibrosis Awareness Month, include:

    • #BlueUp4PF – Join the PFF during the month of September by wearing blue and making a contribution to the PFF. Post your support on social media using #BlueUp4PF. This fundraising challenge honors the memory of PFF Ambassador and founder of #BlueUp4PF Diane Reichert, who passed away earlier this year.

    • Where in the World is PF Awareness? – Share a photo wearing a PFF Breathe Bracelet at an iconic landmark or notable area to help reach the goal of showcasing all 50 states and other countries.

    • Show Up on Social Media – Share your PF story on social media to increase awareness and highlight the PFF’s mission. Use the hashtags #PFWarrior, #pulmonaryfibrosis, #GPFAM2015, #GlobalPFAwareness, #MakeEveryBreathCount.

    • Hear a PFF Ambassador Share Their Story – Now in the second year of the program, new and returning PFF Ambassadors share their experiences with PF to drive disease awareness and to highlight the PFF’s support programs. 

    We have seen a lot of terrific Global Pulmonary Fibrosis Awareness Month activity already on social media. Rosie O'Donnell retweeted a ‘help spread awareness of this rare lung disease’ for us and we've received some terrific photos of people at medical centers sporting the color blue as part of the month long "BlueUp4PF" activities,” said a spokesperson for PFF.

    Read next: Differential diagnoses create challenges with IPF

    Christine Blank
    Contributing Editor Christine Blank is a freelance writer based in Florida.


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