This topic contains 10 replies, has 4 voices, and was last updated by  Jen Cueva 1 month, 1 week ago.

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  • #17666
     Colleen Steele 
    Keymaster

    PHA is offering resources and guidance in how you can help educate elected officials about Pulmonary Hypertension. August is the perfect time to do this because that is when our members of Congress work from their home states. They use this time to learn about important issues that Congress can help assist in improving.

    https://phassociation.org/we-just-have-to-be-heard-use-pha-resources-to-educate-elected-officials/

  • #17673
     Vanessa Vaile 
    Participant

    Joining the PHA Facebook groups to facilitate sharing would be another good starting point. Also I can’t help but think making common cause with related (pulmonary, cardiac, etc) other rare groups would increase numbers and with that reach and potential influence. I’ve been doing online advocacy for 20 years now and have learned that when elections around the corner, politicians count voters.

    PS did you know that, starting with the question mark all the way to the end, you can trim URLs from newsletters and email alerts? That extra code, aka garbage code, is on there for tracking purposes.

    • #17676
       Colleen Steele 
      Keymaster

      Vanessa, thank you for the additional advocacy information! Most of all, thank you for being an active advocate for 20 years! I hope more people follow in your footsteps.

      No, I did not know that about the URL’s! That is knowledge I will put to use from now on. I edited the post…much better. Thank you!

  • #17674
     Vanessa Vaile 
    Participant
    • #17685
       Brittany Foster 
      Keymaster

      Thanks so much for this information. I was actually just participating in an online poll about social media use and advocacy for rare diseases and I ranked Facebook as being one of the top social media outlets to raise awareness. Others that I included were Instagram and Twitter. I have made a lot of amazing connections through these sites and they reach across all age groups. I also use Facebook and some of the pages that I am an admin of to raise awareness and education! That’s so important. As Colleen said, thank you for being a part of advocating for the last 20 years. That’s incredible.

  • #17699
     Jen Cueva 
    Participant

    So true, Colleen! When our local Representatives are in their local offices is a great time to try and catch them. I also find that their assistants are more likely to talk to me at these times. During this time , I’ve often been able to at least talk to the assistants and educate on PH and several have wanted to know more so I was able to email them PH educational information as well as a short version of my personal story.

    • #17700
       Brittany Foster 
      Keymaster

      Jen,
      Personal stories are so powerful. Especially when you are the one sharing your own story. When they put a face to the disease and are actually thinking of a person and not just a number or statistic, it makes much more of an impact and becomes something they NEED to address and CAN’T ignore. I’m a big fan of telling our stories as publicly as possible and saying “PH looks like me too”. It spreads a lot of awareness for rare and invisible illnesses.

      • #17722
         Jen Cueva 
        Participant

        Yes, I think having a name and/or face with our personal stories and what living daily with PH is a huge impact for our local Representatives. Every little step is just one step closer and one more person we have educated .

        Lol, Brittany, yes, whispering doesn’t work!Hehe

        Thank you all for all you’re doing to educate and advocate.
        Together , we will get PH out there , even one by one!

    • #17710
       Colleen Steele 
      Keymaster

      Jen, every little step as individuals that we take to advocate for PH is helping to move this rare disease forward into the hearts and minds of people who have to power to take the big steps towards diagnosis, treatment and a cure. Ditto to what Brittany said, she worded the significance of our personal stories perfectly.

      • #17713
         Brittany Foster 
        Keymaster

        So true Colleen!
        Every little step counts , even if it seems “little” at the time, these can eventually lead to the bigger changes that we wajt to see happening. I say we all keep speaking up amd raising heck! Nobody gets what they want by whispering lol!

  • #19036
     Jen Cueva 
    Participant

    Just wanted to remind everyone that it is now, Advocacy August.Let’s try to reach out to our elected officials and share our stories. As Colleen shared above, PHA offers some resources to help you achieve this.

    Here is the link again, so you can click and complete the steps this Advocacy August.

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