Advocates: Urgent need for ‘broader awareness’ of pulmonary fibrosis
Organizations worldwide gear up for PF Awareness Month in September
September is Pulmonary Fibrosis Awareness Month, and organizations around the world are gearing up to educate others and bring attention to pulmonary fibrosis (PF) — and also interstitial lung diseases (ILDs), which are disorders marked by scarring in the lungs.
“We urgently need broader awareness because with it comes greater investment in research, faster diagnoses, and stronger support systems for patients and families,” Amy Hajari Case, MD, chief medical officer of the PF Foundation, said in a foundation press release.
This year’s awareness month also coincides with the 25th anniversary of the PF Foundation, a U.S.-based nonprofit that provides support for the PF community. The foundation’s theme for this year’s PF Awareness Month is “Every breath of the way,” to honor the strength and solidarity of the PF and ILD community.
“Pulmonary fibrosis is a life-threatening condition with limited treatment options and no cure. .. Through our education, resources, and support, we help patients live more fully,” Hajari Case said.
Landmarks across the U.S. will be lit up in the PF Foundation’s signature blue throughout September to mark awareness month. On Sept. 10 — the 5th annual ILD Day — the PF Foundation and other groups will present a webinar about these conditions called “Genetics and Beyond: Exploring Interstitial Lung Disease in Families and Individuals.”
PF Foundation encourages community to take to social media
Throughout September, the PF Foundation will be posting facts about PF and ILD on its social media pages. The foundation encourages community members to engage with it by following @pfforg on Facebook, Instagram, and YouTube. Likes, shares, and comments can help make sure the word travels far across social media platforms, according to the nonprofit.
The foundation also is hosting in-person walks throughout the month, with one slated for Sept. 6 in the San Francisco Bay Area and one scheduled for Sept. 20 in Chicago. On Sept. 27, there will be an in-person walk in Washington, D.C., as well as a virtual National Walk Day that anyone in the U.S. can join.
On National Walk Day, the PF Foundation hopes to raise $125,000 to advance support and research for PF, per its webpage. Participants raising $100 or more may receive a commemorative 2025 walk T-shirt.
According to the the foundation, “PF Awareness Month helps patients and caregivers speak openly about the disease, encourages early diagnosis, and fuels momentum for better care and treatments. With increased visibility, we move closer to finding a cure — and to ensuring that no one faces pulmonary fibrosis alone.”
PF community in Europe also planning awareness month events
Also in North America, the Canadian PF Foundation is gearing up for PF Awareness Month. Landmarks across Canada will be lit up in that foundation’s red and blue colors; there will also be community walks, an educational webinar, and regular meetings of virtual support groups. Many programs are offered in French and English.
The Canadian PF Foundation also is running the Pucker Up Challenge, which dares people who do not have PF to try to hold their nose and breathe through a drinking straw — a feeling that is said to mimic the difficulty breathing experienced by many with PF. Photos and videos of people doing the challenge can be shared on social media and the foundation’s website.
Organizations on the other side of the Atlantic Ocean, such as the U.K.-based Action for Pulmonary Fibrosis, are also getting ready for PF Awareness Month this September.
At the heart of this campaign is a clear message: Access to oxygen is not a luxury. It is a fundamental patient right.
The European Pulmonary Fibrosis Federation this year is focusing its awareness campaign on the issue of access to oxygen and supplemental oxygen, which are treatments that have been demonstrated to improve health and life quality outcomes for people with PF. The federation has created a range of resources for this campaign, including social media visuals, videos, and a poster.
“At the heart of this campaign is a clear message: Access to oxygen is not a luxury. It is a fundamental patient right,” the federation stated on its website. “Every person with pulmonary fibrosis deserves oxygen access. Anywhere, anytime—whether at home, in hospital, at work or while travelling.”
The goal of each year’s awareness month, the webpage states, is to “shine a light on the realities of pulmonary fibrosis.”
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