• Let’s Unite for Rare Disease Day 2023!

    Posted by Charlene Marshall on February 28, 2023 at 8:45 am

    I enjoy celebrating Rare Disease Day (RDD) each year, which falls on the last day of every February. That means RDD is today! This day gives me a chance to help raise awareness for the rare disease that complicates my life; living with idiopathic pulmonary fibrosis (IPF) as a young adult is hard. It’s hard for all of us who deal with this cruel lung disease…. breathing should never be hard work!

    While I enjoy talking about IPF on RDD each year, I also find myself a bit overwhelmed with how to mark the day and what I should be doing. The need for research, awareness, and compassion for all rare diseases is so great that it’s hard to narrow down my focus. Last week I wrote a PF column on how I will specifically be celebrating RDD this year. The column is called 3 ways I plan to raise awareness on Rare Disease Day.

    How will you celebrate RDD today?

    What does RDD mean to you as a patient living with a disease that affects fewer than 1 in 2000 people?

     

     

    samuel-kirton replied 12 months ago 1 Member · 1 Reply
  • 1 Reply
  • samuel-kirton

    Member
    March 6, 2023 at 7:50 pm

    Charlene,

    The good thing about advocacy is there is a role for everyone. For RDD this year I focused on the power of many voices uniting for a common goal. I spent a part of the day working on appropriation requests for government funding of more research in support of the rare disease community.

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