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    • #16867
      Leah Leilani
      Keymaster

      Shout out to PatiantsLikeMe. @patientslikemeinc ‘s mission is to improve the lives of new patients through new knowledge derived from real-life experiences.

      PatientsLikeMe started with one patient, Stephen Heywood, who was diagnosed with ALS in 1998 when he was 29. His brothers, Jamie and Ben did everything they could to slow Stephen’s disease. They became citizen scientists, harnessing the power of any and all information they could. Today, PatientsLikeMe is the world’s largest integrated community, health management and real-world data platform.

      Through PatientsLikeMe, a growing community of more than 830,000 people with over 2,900 condition share personal stories and information about their health, symptoms and treatments, with a goal to improve the lives of all patients through shared experiences. By connecting with people like them and advancements in our health network, patients can discover new path to improve their health today, and in the future.

      Do you follow PatientsLikeMe on their social media accounts?

    • #16875
      Tracy Myall
      Participant

      I had never heard of them. But I am going to follow them now! It sounds like an interesting group to be a part of and maybe there are even people like me out there with Myofibrillar Myopathy. I know there are, but finding any information on my form of muscular dystrophy it’s so very difficult. Sometimes I feel like I’m alone in the world😔

      • #16886

        I understand the feeling, sometimes it seems like no one gets the struggle. I am glad you shared your feelings and although we don’t have the same MD I want you to know you’re not alone.

      • #16887

        I understand the feeling, sometimes it seems like no one gets the struggle. I am glad you shared your feelings and although we don’t have the same MD I want you to know you’re not alone.

    • #16876
      Pete Barron
      Participant

      Thanks Leah, I had not heard of these guys before. Now I will follow them! It seems we all have expertise in navigating our own disease, sharing some of that “hard won” knowledge might keep somebody else’s journey from being so tough.

    • #16891
      Jerry Quintana
      Participant

      Leigh,would you assist me in logging in to, PatientsLikeMe? I would like to read about individual’s concerns regarding their symptoms.
      Thank you..Jerry Quintana

    • #17122
      Leah Leilani
      Keymaster

      Jerry, here is the link to the PatientsLikeMe website. Just click on the highlighted area. I hope you find everything you’re looking for.

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