Are you involved in advocacy efforts outside of social media?

June 27, 2022 in IBD

What can IBD patients (or anyone!) do to protect our access to the healthcare we need?

(Whether that's self-advocacy with your insurance company or advocacy on a broader scale.)


1 - 2 of 2 Replies

  • Jackie_ZExpert

    This is such a huge question and I think it can be so paralyzing because of its scale.

    I think you can always start with your local IBD chapters of various organizations. Ask them how you can get involved on a local level. There are regularly opportunities to speak with lawmakers in your state and the whole country about what it's like to live with IBD and to help pass bills that make our lives/experiences better.

    But don't forget about advocating for individuals too! Local fundraisers, gatherings, advocacy/awareness events, all count to improving our lives.

    Play to your strengths, if you like talking about your life, try to connect with local med school students.

    If you're an organizer, reach out to local orgs to see whats on the upcoming dockets and how you can help raise awareness for bills.

    If you want none of the spotlight, all this advocacy creates a lot of paperwork and data. Everyone always needs help with this side of things.

    June 27, 2022
  • ownyourcrohnsPatient

    I agree with @Jackie_Z here. I ran many support group for my local Crohn's & Colitis Foundation off social media before my social media advocacy journey even began. Many of us work with our hospitals and local hospitals to help other patients as well. Advocacy is what you want it to be, not what the world says it is :)

    June 27, 2022
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