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Calling all metastatic cutaneous melanoma patients and survivors!
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Calling all metastatic cutaneous melanoma patients and survivors!

› Forums › General Melanoma Community › Calling all metastatic cutaneous melanoma patients and survivors!

  • Post
    • December 3, 2024 at 12:54 pm
    Miriam Kadosh
    Keymaster
      In partnership with Replimune, we have developed a survey intended for those with a current or previous diagnosis of cutaneous melanoma stages 3 or 4. Please take this brief survey to help the MRF better understand the options that metastatic patients have been offered and the kinds of support we can provide in the future.

      https://www.surveymonkey.com/r/ZLR8ZHQ

      Thank you in advance!
      Please reach out to [email protected] with any questions.
      Best,
      Miriam

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    • Replies
        • December 4, 2024 at 11:46 am
        ed williams
        Participant
          Miriam, not many of the late stage patients hang around here since the site changed the “Forum” a few years back. I come around once in awhile for a visit. If Replimune wants some information about where they can get some more RP1 patients, then I would suggest they contact on Facebook “Melanoma stage 4 support group” administrator Ashley Olsen for permission to put some stuff up. We have 5.2 thousand members at the current time and the site is very active. A few research groups are allowed to put up stuff once in awhile when looking for survey data but it must be first approved from Ashley.
          • December 4, 2024 at 11:49 am
          Miriam Kadosh
          Keymaster
            Thanks, Ed! Would you be able to post in the facebook group for me? send me an email at [email protected] for more info! Thank you so much!

            Miriam

              • December 9, 2024 at 8:27 pm
              ed williams
              Participant
                There are three or four different groups that have the permission of Ashley Olsen to post interview or questionnaire offers. Some pay fees for doing the interview while other are looking for information. I would join the facebook group and speak with Ashley via direct message on facebook. She has a pharma background and is easy to work with. I am sure working with Replimune she would approve you posting something to the group. You might find it interesting to see what a large group of melanoma patient helping each other looks like. This site in the past was very similar before the changes a few years back. Just click on following link and ask to join, you can add more so Ashley understands who you are. https://www.facebook.com/groups/just4melanoma4s/
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