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Care Management Toolbox

Organizing your Medical Binder 

Bindertek produces sturdy barrister grade D ring, soft close binders that are less likely to destroy paper records. They are a little more expensive but they hold up well.  Binder tabs are the quickest way to find what you need in when you need it.  Bindertek sells index tab dividers tabs and other supplies. You can also create your own tabs by category.  Below are just a few of the high level tabs.  Forms are available in the My Medical Forms section of the Care Management Toolbox.

Basic Information

  • Name
  • Birthdate
  • Social security number
  • Blood type
  • Immunization Records
  • Emergency contact information
  • Preferred Hospital


  • Developmental Milestones
  • Growth Charts


  • Health insurance – copy of card and policy details
  • Vision insurance – copy of card and policy details
  • Dental insurance – copy of card and policy details

Barth Syndrome Materials

  • Emergency Department Guidance 
  • Barth Syndrome Healthcare Brochures
  • Fact Sheets


  • Barth syndrome
  • Other health conditions


  • Current Medications/ dose and frequency
  • Changes and why


Tests Procedures

  • Dates, locations, physician/surgeon information
  • Test name and findings (blood tests, echocardiograms, electrocardiograms, etc)

Health care providers

  • Primary care physician
  • Specialty physicians
  • Therapists
  • Home health nurses
  • Dentist


  • Medical appointments routine/ problem focused
  • Provider telephone conversations

Hospitalization History

Vital documents

  • Living wills
  • Advance directives
  • Medical power of attorney
  • DNR orders


The more details you include, the easier it will be to follow progress, notice trends, and stay on top of any reoccurring health issues. Store these binders in an easily accessible spot in your home so you will be more likely to actually use it – take it along to all of your doctors’ visits and you’ll be pleasantly surprised at how many questions it helps you answer quickly and accurately. 

  • Set a date to keep the up to date 
  • Keep it in a location where you know to find it when you need it
  • Create a Barth Bag and keep the medical binder in the bag

Barth Syndrome Care Bag Contents

  • Hand sanitizer
  • Digital thermometer
  • Disposable gloves
  • Medication holder and dispenser 
  • Tumbler for water
  • Medical Binder
  • Highlighter
  • Pencil/ small pencil holder/ Pen: Pencils don't run out of ink when you need to write something down the most it's always good to go with a pencil and a handheld pencil sharpener.
  • Pad of paper
  • Sticky notes:  Never mark up the original file/ or your original file, mark ups should be placed on post it notes 

Other Resources


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