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Lisa Salberg Find out more about Lisa Salberg
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  • Please particpate in this brief survey

    The HCMA has been a member of the Genetic Alliance for many years now. They are conducting a survey that will help many people. Please take 3-5 minutes to complete this important survey.

    Thank you,
    Lisa
    **************************************************

    Dear friends,


    The National Coalition for Health Professional Education in Genetics (NCHPEG – pronounced “NITCH-peg”) and Genetic Alliance are partnering in a survey. The purpose of this survey is to ask individuals living with relatives or friends with genetic conditions about their perceptions of their health care providers’ knowledge of genetics. The information from this survey will be used to develop genetics education for specific types of health care providers.

    This is an opportunity to be heard and to have our member's voices heard. Please click on this link to respond to the survey, http://www.nchpeg.org/SFGC_Survey/Survey.asp

    We want to be sure that we have heard from many different people representing experiences with many different diseases – so please respond today!

    Thanks so much!



    Sharon

    *************
    Sharon Terry, MA

    President & CEO
    Genetic Alliance
    4301 Connecticut Avenue, NW
    Suite 404
    Washington, DC 20008-2369
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    Just a quick note –

    If you find by clicking the website shown you get a “Page Can Not Be Found” – delete the final period from the address and try again – or use the address below.
    Burt

    http://www.nchpeg.org/SFGC_Survey/Survey.asp

    Comment


    • #3
      Thanks, Lisa.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

      Comment


      • #4
        This info is very important to all of us. Health care providers must be able to answer questions about all genetic issues, but particularly about genetic testing. They must be able to provide the info to individuals so that they can make an informed and intelligent decision before proceeding with such testing. There must be a value in it for the individual.

        I hope we have a huge number of people answer this survey. The results will help to drive the standards for genetic issues and ensure that appropriate education is required for those who are in position to make decisions for our care. Linda

        Comment


        • #5
          Thank you Lisa for letting me have a voice in this.

          The survey is not long at all. I enjoyed supplying the info.
          49 yrs. old
          Diagnosed at 31.
          Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
          First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
          Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
          Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
          My brother passed away suddenly at 34 yrs old from HCM.
          2 teenage children, ages 17 and 15.

          Comment


          • #6
            survey

            thanks,....I filled it out
            \"It is not length of life, but depth of life.\"

            Ralph Waldo Emerson

            Comment


            • #7
              I also filled in the survey, i also vented a little

              Shirley
              Diagnosed 2003
              Myectomy 2-23-2004
              Husband: Ken
              Son: John diagnosed 2004
              Daughter: Janet (free of HCM)

              Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

              Comment


              • #8
                survey not formatted correctly

                I took this survey, and I must say, they did not set up the page very well. It is broader than my large computer screen can accomodate even though I have elected for the smallest size tex. On several sections where you were asked to choose from a list, the list was on one side, and the scrolling area was off the screen, so you could not scroll to an item you could see without zooming the page back and forth-----

                I really don't understand why such mistakes would be allowed on a survey

                Comment

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