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    • #33167
      Jen Cueva
      Keymaster

      If you’ve recently joined us, you may be wondering what Rare Disease Day is. Rare Disease Day started in 2008 and is an international rare disease community. Rare Disease Day is February 28th, and we are looking ahead.

      It’s celebrated each year on February 28th because it’s the rarest day of the year. The goal is to share our colors and be a voice across the globe. So, let’s paint the town or social media periwinkle(PH awareness color) or colorful as we let our voices be heard as we share our journeys with PH.

      To learn more about Rare Disease Day, visit their website.

      What things can you do to celebrate Rare Disease Day this year? Will you share their video on social media? Will you share a bit of your PH journey? Together we are stronger.

    • #33169
      Colleen Steele
      Keymaster

      Thank you @jenc for encouraging us to start thinking about Rare Disease Day and how we will do a part to spread awareness.

      Please visit the Rare Disease Day website that Jen shared. You might also consider reading columns about this important day written by our BioNews columnists over the past few years. Click on the following link and it will take you to many of those columns that you can select to read. Rare Disease Day Columns

      I would like to emphasize that Rare Disease Day isn’t just about PH – it’s about all the rare diseases of this world and how the struggle of being rare unites us. Please take this opportunity to spread PH awareness but take some time to learn about and support another rare disease that you aren’t familiar with. Last year I wrote a column encouraging all of us to do just that. Here is the link: Let’s Learn Something New For Rare Disease Day 2021

      We are all in this together!

    • #33188
      Jen Cueva
      Keymaster

      Thank you, @colleensteele, for clarifying a bit about Rare Disease Day. When I read my post today, I can see how some may think it is only about PH. That’s why we make a great team!

      I love that you shared not only your column from last year but our various columns across BioNews. While we may be in different rare disease communities, so many things that others share, we can find relatable.

      • #33192
        Colleen Steele
        Keymaster

        Oh no @jenc I was just emphasizing the value of coming together on Rare Disease Day learn more about our rare disease extended family. Your post was perfect and I’m glad you thought to get us thinking about it before the day arrives.

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