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  • How Do You Plan On Recognizing Rare Disease Day?

    Posted by Charlene Marshall on February 22, 2020 at 9:17 am

    You’ll likely read a lot about Rare Disease Day this week as it is quickly approaching on Saturday, February 29th 2020. Despite the number of Americans diagnosed with pulmonary fibrosis (PF) being comparable to breast cancer each year, the majority of the population has never heard of PF. As a patient living with IPF, this is one of my greatest frustrations!

     

    Sometimes when things happen to us unexpectedly, it can shift the course of our lives. I never would have imagined myself as an advocate for a fatal lung disease but I now feel compelled to help raise awareness for PF. Sometimes I am spiteful that this feels like a patient’s responsibility, but who better than to share their story for the purpose of raising awareness?

     

    Feel free to click this LINK for some downloadable content on Rare Disease Day 2020 to use on your personal social media sites.

    How will you help us raise awareness for IPF/PF on Rare Disease Day 2020? Share some of your ideas with us below!

    Charlene & Mark.

    Charlene Marshall replied 4 years, 1 month ago 2 Members · 2 Replies
  • 2 Replies
  • Jay Turbes-s

    Member
    February 25, 2020 at 12:00 pm

    Bedside in hospice.

  • Charlene Marshall

    Member
    February 27, 2020 at 8:00 am

    @jay-turbes-s

    Hi Jay – my heart hurts to hear this, I am so sorry this disease is robbing you of so much! I am on my way to California to make noise about Rare Disease Day. I will create awareness for you my friend, and dip my toes in the ocean sending you love and strength. Thinking of you.
    Charlene.

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