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    • #30832
      Christie Patient
      Moderator

      Recently in the forums some our members were chatting about PF awareness. Despite a large community of people diagnosed with PF, members were frustrated that clinical trials seem to fall flat time and again for lack of participants. There just isn’t a lot of awareness about PF despite it being a fairly common diagnosis as far as rare diseases are concerned. There are over 50,000 new diagnoses of this disease (in the US) each year.

      One way to improve our outcomes is to spread awareness about this disease in our communities and online. The more people know, the more likely they are to ask about PF if they start feeling symptoms. Quick diagnosis means more eligible study participants and better research outcomes. Plus, awareness has massive potential to generate funding for research from donations. Just look at the ALS ice bucket challenge of 2014. What started as a silly internet challenge led to not only widespread awareness of ALS, but research funding from the ALS Association increasing by 187%! The ripple effects of this extra money spread far and wide (see the link for more stats), including a new treatment in 2020 that proved to slow the effects of the progressive, and terminal disease.

      I’d love it if we could do the same with pulmonary fibrosis! Our former columnist Kevin Olson has some great ideas to spread awareness that he shared in this column. Each of his ideas are manageable for individuals with lower energy levels (he did a lot of them before his lung transplant).

      Do you have more ideas to help spread awareness of PF? Have you already become an outspoken advocate for this disease? Please share how you are getting the word out!

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