CIDP Outcome Survey

    • Anonymous
      May 13, 2007 at 12:01 pm

      I just completed the CIDP Outcome Survey. I am so gratful that the GBS/CIDP Foundation is compiling data to give our legislators. I hope everyone that has received the survey is able to complete it and mail it in.
      This information is so important.

      Pam K

    • Anonymous
      May 14, 2007 at 1:17 am

      Where did you get the survey? I would like to get one & fill it out also…

    • Anonymous
      May 14, 2007 at 1:46 am

      i also have not recieved that survey but wouuld be very interesten in filling it out. also

    • Anonymous
      May 14, 2007 at 11:08 am

      I Have Not Received An Outcome Survey Either And Would Definately Fill One Out.

      Is This Something Our Foundation Is Sending Out??

    • Anonymous
      May 14, 2007 at 2:20 pm

      I am so delighted that there is such support for the Outcome Study. The survey was mailed to the approximately 650 patients who have identified themselves to us as having CIDP. If you have CIDP and have not received a mailing by the end of this week (5/18), please call the office and ask that one be sent to you. We will keep your name confidential. The reason why it went only to CIDP patients is because there is a larger use of IVIG among this group of people. We will make results known to those on our mailing list but it will be some time before we get the surveys analyzed.

      Barbara Katzman
      Executive Director
      GBS/CIDP Foundation International

    • Anonymous
      May 14, 2007 at 2:42 pm

      [B]Hi Barbara,

      Would it be possible for me to fill out the survey even though my Frank passed away. I have so much knowledge to share. He had CIDP and did receive IVIG and Medicare gave him such a hard time in getting his IVIG.

      Please let me know if it’s possible.

      Thank You Barbara[/B]

    • Anonymous
      May 14, 2007 at 5:24 pm

      Hello again,
      I got my survey in the mail today and I do want to fill it out and send it in. For some of the questions, I am going to add my own words so that I can answer better.

      They are coming, so just watch for the big white envelope in your mailbox.

    • Anonymous
      May 14, 2007 at 5:54 pm

      I rec’d my survey today. I have filled it out and added a few side comments here and there.
      Have a wonderful day everyone!

    • Anonymous
      May 15, 2007 at 1:37 am

      Filled mine out today and will mail it back tomorrow.Thank you to the Foundation for all of their work on our behalf!

    • Anonymous
      May 15, 2007 at 9:28 am


      If I remember right, one of the first questions was if the one filling out the form is the patient or a caregiver… I would ask for one if you haven’t gotten it yet…


    • Anonymous
      May 15, 2007 at 10:32 am

      [B]I had filled out the Foundation’s questionaire a few years ago because Frank couldn’t write , but this must be a different questionaire they sent out.I’m hoping the Foundation will send me the new forms, if not Codystanley (Liz) is making me a copy to fill out.[/B]

    • Anonymous
      May 15, 2007 at 12:16 pm

      I sent you a personal message. Please look for it.

    • Anonymous
      May 20, 2007 at 1:02 am

      I filled out my survey and only wished I coulda added 10 written pages for my personal comments. The IVIG shortage hit me twice and I was scared to no end that the horrid pain would return. It tried to. It has.
      I had the insurance coverage but no access to IVIG. I joked the nursing staff better be more watchful as someone may sneak a few hypos of IVIG from sleeping infusion patients drip bags……
      Several wonderful folks had their insurance deny them and I was more than willing to let them share mine if possible””’
      Please somehow let the people in power make IVIG lower in price. $ 54,000 a month is just…unjust.