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New resources for Mayo Clinic HCM Patients

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Cynaburst Find out more about Cynaburst
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  • New resources for Mayo Clinic HCM Patients

    For those who are current patients or families being treated at Mayo Clinic's HCM Clinic, or for those who are thinking of visiting Mayo Clinic for HCM treatment or screening, we are starting a brand new Facebook Group for you. Join us and meet other Mayo patients and learn what is happening in Mayo Clinic's HCM Program. Please spread the word to others as well.

    ****This is a CLOSED group, which means that your Facebook friends who are not members of the group cannot see what you say within the group.

    https://www.facebook.com/groups/967719633292905/

    We are also hoping to achieve critical mass to start a designated HCM Community (right now we are included under Heart and Blood Vessel Conditions) at the newly redesigned Mayo Clinic Connect website:

    http://connect.mayoclinic.org/group/...sel-conditions

    You may join this site under any name, so for those who are concerned about privacy, this may be a good way for you to connect with other HCM patients at Mayo Clinic while maintaining your privacy.

    Hope to see you all in one of these places soon!
    Last edited by Cynaburst; 10-03-2015, 11:08 PM.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

  • #2
    Hi Cynthia, Are you saying there are two groups? a facebook group for mayo HCM alumni AND a Mayo Clinic group ? I don't do facebook so just wondering
    Jill
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

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    • #3
      Jill - There is a Facebook Group for Mayo patients, past, present and future, and there is also a separate Mayo Clinic website: www.connect.mayoclinic.org.

      The website has a message board section that is in the process of being re-configured, and we are hoping that we will have a very active HCM community there. So far, there is not too much going on there, but we hope to change that and hope to start more HCM conversations on the website. Once the docs and other staff get involved, which is their plan, and the site is more active, it will be a great resource. Right now, there is more activity on the brand new Facebook group but hopefully that will evolve and change the other direction.
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

      Comment

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