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    • #15802
      Jenny Livingston

      If you’re on Instagram, please consider this your personal invitation to join myself, Bailey, and our friend Stephanie for an IG live event tomorrow evening. Here are the details:

      Join us this Wednesday, October 28th at 7:30pm ET for an IG Live about “Trikafta – Who can access it, who cannot and what the CF community is doing to make the treatment more widely available to people with CF”.

      Host Ally Macgregor will talk to guests Jenny Livingston – @jenny_livingston (CF Forum Moderator), Stephanie Stavros – @rosielifewithgrey (Co-Founder, CF Get Loud) and Bailey Anne Vincent – @catchingbreaths (CF Columnist) about the breakthrough, life-saving CFTR modulator Trikafta and the issues that are making it difficult for people with CF around the world to gain equal access to it.

    • #15807
      Paul met Debbie

      I wish you a good conversation.
      Perhaps you could post a small summary on the forum later, for those not on Instagram.

      I learned today that my CF center expects Kaftrio (this is how Trikafta is marketed in my area) to be be available in the Netherlands next summer. It has been approved for the EG, but now every country needs to negotiate a price that it is willing to pay for it to be covered in the national health-insurance system. So I still have some time to ponder whether or not to try it out.

    • #15808
      Jenny Livingston

      Paul, this is a great idea! Also, I believe that BioNews will be converting the IG interview into video content for YouTube and also an audio podcast. We can definitely share links to those things if/when that happens.

      And regarding your Trikafta/Kaftrio news… woohoo! I’m glad to hear that negotiations are underway. I completely understanding the pondering and deliberation that come with this opportunity. I wish you the very best in whatever you choose!

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