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Care Management Toolbox

Emergency Department Guidance

Barth syndrome is an unpredictable health condition and during an intercurrent illness rapid decompensation is not uncommon.
This Emergency Department (ED) Management template should be shared with the physicians of the individual who has Barth syndrome for their input and approval. Physicians may amend this document to address additional risks the physician deems appropriate.
Completing This Form

  • Enter the name of the individual diagnosed with Barth syndrome and date of birth
  • Provide this template to the individual’s physicians for review and edits when the individual is well, so you’ll have it ready if needed when going to the Emergency Department.
  • Ask the physicians to review and amend any specific management instructions they feel important to change, including when to contact the physician

Corresponding Forms (available in form section below)


  • Keep a copy of this completed document readily available at all times.
  • Provide a copy of this document to the Emergency Department upon arrival
  • Provide a copy of this document to first responders upon arrival
  • Keep a copy of this document in your vehicle
  • Provide a copy of this document to the school nurse
  • For expanded information ALWAYS have a supply of healthcare brochures available to provide to EMS first responders, physicians and the Emergency Department
  • Alternately, you can provide them with the Barth Syndrome Healthcare Brochure

Emergency Department Guidance Form

Corresponding Documents

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