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    • #22988
      Colleen Steele
      Keymaster

      rare disease day

      Rare Disease Day is February 29th. The month of February leading up to the 29th is a time to raise awareness among the general public and decision-makers about rare disease and their impact on patients’ lives.

      How have you been or what are you planning to do to celebrate this opportunity to let the world know about Pulmonary Hypertension and how it has impacted your life? Is there something you have done in the past to promote Rare Disease Day that worked well?

      Please share with us.

      https://www.rarediseaseday.org/article/what-is-rare-disease-day

    • #22993
      Brittany Foster
      Keymaster

      Colleen,
      The great thing about rare disease day is that it actually falls in the month of February which is also heart awareness month. Each day for the month of February there are things to post that the different CHD groups post. It is sort of like a picture challenge talking about something different each day: This includes- diagnosis, medications, surgeries, xrays, procedures, nurses, doctors, family, siblings, caregivers etc. So it encompasses a lot. Maybe doing a picture challenge like this for PH would also be a good way to spread awareness?

    • #23114
      Vanessa Vaile
      Participant

      So far mostly on Twitter — for me, more reach as I run a handful of 2,000+ streams, modest by “viral” standards but substantial enough to reach more people than I would on Twitter — with a interest/topic range likely to reach individuals who might not be as keenly aware of rare diseases as we are. Juxtaposing cliches, I intend to get off the beaten track and not just preach to the choir.

      I’m planning Facebook timeline changes too. Fwiw Instagram shares display better on Facebook than they do on Twitter. Both benefit from adding hashtags and copy.

      • #23121
        Vanessa Vaile
        Participant

        oops…meant “more than on other social media”

    • #23117
      Brittany Foster
      Keymaster

      @vanessavaile Thank you for your awareness that you are spreading this month and throughout the year! I know this is so important to you to help educate others, even if you feel like people aren’t listening. SOMEONE will benefit from what you post and that’s what I have learned. Even if I have helped just one person reach a diagnosis sooner or question their doctors to get the right testing then I have done my job !

    • #23122
      Vanessa Vaile
      Participant

      I never forget and am ever reminding others that social media messaging can be like tossing a bottle with a message in it into the ocean. otoh the more messages in more bottles ups the odds. Remember the proverb, “save one life and you save the world”

    • #23124
      Colleen Steele
      Keymaster

      @vanessavaile that is how I feel about sharing my son’s story and promoting awareness. If I help just one person than the effort I made was well worth it.

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