Hi everyone! I hope this post sees you well or add well as can be expected. So my niece is 16 and has been diagnosed with extraskeletal mesenchymal chondrosarcoma, a very rare and very aggressive cancer. She is trying to find someone, anyone that has been diagnosed with this so she doesn't feel do isolated and can talk to someone about their journey as she tries to face some tough decisions. Is there anyone on here? Is there any other support group or hospital you could reach out too and see if there are any listed patients. We are 5 of us trying to network the globe for a survivor or patient or parent of a lost child. I'm hoping that if I reach out to enough people and they all reach out to enough people who in turn reach out to others we may find someone
Hi sskewd and welcome to the online community
I've just read your post and typed extraskeletal mesenchymal chondrosarcoma into the search facility in this group. It brought up Kirsty182 who posted on here a month ago. By tagging her she'll see this post and might respond directly to you. You can click on her username to read about her and see her latest activity in this group.
Best wishes in your search
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