Increasing Awareness about PF: Ideas from Rare Disease Day and Ongoing Advocacy Ideas

If you are experiencing significant challenges associated with symptom management, quality of life, and health equity or accessibility, you are not alone. Over 300 million people around the world are living with a rare disease and facing similar concerns. Because of this, each year, rare disease organizations like our nonprofit coordinate together for a virtual, international advocacy day known as “Rare Disease Day.”

Rare Disease Day typically occurs on or around the last day in February, and serves as a way to collectively raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. At Pulmonary Fibrosis NOW!, we are committed to advocacy and awareness efforts all year long. Read on for tips on how to continue building momentum after Rare Disease Day in 2023 – all from the comfort of your own home.

Ways to Increase Awareness About PF:

1. Learn about rare disease advocacy.
   

Begin by browsing the Rare Disease Day agenda and webstream. Then, share your favorite or the most relatable parts with relatives, friends, coworkers, neighbors, or anyone else you’d typically interact with. 

2. Get inspired by rare disease advocates – including those who work with us to fight PF.

No matter the difficulties you may be facing, you can feel empowered by those who have faced the same challenges and frustrations – and united through a shared passion for change. Get to know the global Rare Disease Day heroes here, and hear from our own PF NOW! advocates here. For additional articles related to PF, visit our advocacy articles here. 

3. Connect and engage with PF advocates.

Online advocacy outlets such as Facebook have allowed us to expand our reach farther than ever before. We now reach thousands of people in at least 50 countries. To find and interact with someone near you who also has or is impacted by PF, please share your story in the PF NOW! community forum. Don’t worry if you’re new to social media – we have a free, step-by-step instruction manual available to view, download, and print right here.

4. Get and give support in our virtual support group meetups.

Our support group meets on the second Tuesday of every month and the fourth Saturday of every month. We try to accommodate a variety of time zones. As long as you have or are impacted by PF, you are welcome to join us on Zoom where we discuss a variety of topics directly related to PF research, education, advocacy, and awareness. To attend the next meetup, please register here. To hear tips from past support groups about topics such as coughing, mental health, or deciding on a treatment plan, please contact us. 

5) Become an advocate for yourself and others. 

There are many ways to become an advocate who stands up for yourself and others with rare diseases. 

• A common obstacle for people recently diagnosed with PF is the challenge of finding the right care, even though a variety of trained professionals can assist patients with PF. Please help us build our advocacy resources by developing a network of trusted, patient-recommended PF specialists. If you’re impressed with any of the specialists you see, we want to hear your recommendations! This could include, but is not limited to: pulmonologists, respiratory therapists, occupational therapists, chiropractors, acupuncturists, nutritionists, and more. Please submit your anonymous recommendations for PF specialists here. Your experience means the world to our community members. 
• There are a variety of volunteering opportunities at our organization. No matter your skills or background, we are sure that you’d bring a unique addition to our team of volunteers. Please contact us here in order to learn more about becoming a volunteer. 
• Even if you don’t have the expertise or time to assist in the ways mentioned above, you can still help spread the word about our mission and increase awareness about PF. To support our organization’s mission, please consider making a contribution or hosting a fundraiser so that others can donate toward our cause. 

Do you have any additional suggestions for advocacy activities? Please comment below with your favorite way to advocate for yourself and others who have or are impacted by PF.

Stay In Touch

PF Now! hosts a virtual support group on Zoom every month. Not only will you strengthen your network of connections but you’ll learn firsthand how those with PF best look after themselves. PF Now! also has a Facebook group whose active community shares their PF journey and their tips with others. New to online support groups? Download our free step-by-step guide for online advocacy here.

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