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Calling All Readers!!!

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Lisa Salberg Find out more about Lisa Salberg
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  • Calling All Readers!!!

    The Genetic Alliance is conducting a survey of those with genetic conditions, as a member of the Genetic Alliance it will help us all to have this information. PLEASE take the 5 minutes required to complete the survey on the link below!

    Here is the letter for the Genetic Alliance.

    Dear all,

    As many of you recall, we have been conducting a survey - asking consumers, patients, about their experiences with their health care providers.

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

    Some of you have reached many of your members, and so for some even rare diseases we have hundreds of entries - Bravo! Now we need you to send this far and wide...

    We've extended the survey so that we can be sure to capture a more representative sample. Please encourage your members to answer this survey. We will keep it open until we have sufficient numbers of answers from common diseases, and broader representation from rare disease communities and underserved communities. So please send this URL out to your members - asking them to answer the questions today! It will only take them five minutes. You will be receiving both the raw data for your condition, as well as the completed reports. This data will be useful to you as you work to understand what the clinicians who treat your members know and don't know. You will also come to understand how your members learn best. But you will need more than 6 or 7 answers to make this useful!
    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
    Well i did it, and said somethings that were on my mind too

    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


    • #3
      Lisa, Is this the same survey we had going a while back, or is it a second one with more detailed questions? If it's the same one, shouldn't each family respond only once? The first part looked the same to me, but I didn't remember some of the last questions. Linda

      Comment


      • #4
        Same one, with a few new questions I think.

        Lisa
        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)

        Comment


        • #5
          Should those of us who responded before do it again?

          Reenie
          Reenie

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

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          Today's Birthdays

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