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  • #16
    mcintk2, I know of a number of advocacy groups - you can do a search. The one that comes immediately to mind is the American Kidney Patient nonprofit. I also started a nonprofit for supporting ESRD dialysis patients but it is not an advocacy Foundation since many others do that. I am happy to send you any resource information we have that may be useful. Feel free to visit us at www.esrd-patient-support.org.

    For Junior member and others - there is a virtual support group for dialysis patients. Contact us at support@esrd-patient-support.org and I can send you the information.

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    • #17
      I just found this thread. My clinic let us, as patients, start a support group, but it is poorly attended. We can only do it on Sunday afternoons. We have to do it at the clinic so it can only be for patients there. They don't let us put up any posters or flyers about the support. They won't hand out a flyer to patients. I'm having issues with my clinic and feel uncomfortable talking to other patients about my issues when we meet at the clinic and the social worker is there and a nurse comes in and out of the meeting. I don't understand why it's such a struggle to find the support we need as patients.

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      • #18
        You can just go over to Ihatedialysis.com, and complain like all the others there do....

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