Reply To: Thalassemia Education

  • Kristen Kelly

    Member
    September 23, 2022 at 12:39 pm

    Hello,

    I reached out to our SCD/Thalassemia nurse coordinators at Texas Children’s and they use literature provided by Cooley’s Anemia Foundation a lot. I hope this helps!

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    Kristen Kelly, BSN,RN,CPHON
    Houston, TX
    United States
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    Original Message:
    Sent: 09-21-2022 11:06 AM
    From: Anne Joseph
    Subject: Thalassemia Education

    Hello,

    I wanted to see what other institutions do for thalassemia education.  I am working with our hematology team to develop an educational binder for transfusion-dependent beta thalassemia patients, as well as non-transfusion-dependent beta thalassemia patients.  I’m envisioning something similar to the COG New Diagnosis Binder, since it is so comprehensive, but of course directed toward the lifelong needs of these thalassemia patients.  If anyone does something like this, can you please let me know what all you have included in your binder?  Or if you don’t use a binder, what educational resources do you use?  Currently we feel that we don’t give them quite enough resources which is why we want to expand it.

    Thank you!
    Anne

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    Anne Joseph, BSN,RN,CPHON
    Program Coordinator, Patient and Family Education
    Milwaukee, WI
    United States
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