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  • My Health Passport: Consider the following as an add on to the SWF Medical Records Binder information:

    FCIC's My Health Passport  is a document that should be completed by an individual (and/or their caregiver), to describe important aspects about their special health care needs. My Health Passport was designed to be shared with many types of healthcare providers, in clinic and hospital settings. It is especially useful for providing pertinent information to those who are not very familiar in providing care to individuals with intellectual/developmental disabilities. The forms are available for download. They can be printed as is, or the information can be typed in before printing. English version| Spanish version. We would welcome any feedback or comments regarding your experiences with using FCIC's My Health Passport!

 

  • Medical Record Keeping Forms
    Because the treatment of Sturge-Weber syndrome (SWS) may involve a variety of health care professionals, it is very useful to have a working system to track ongoing medical care and treatment.

  • Resources for working with insurers
    The Sturge-Weber Foundation position paper on the necessity for the treatment of Port Wine Birthmarks.
  • Emergency Room Guide for SWS
    The major neurological features of patients with Sturge-Weber syndrome include seizures, headache, focal neurologic deficits and cognitive and psychological impairment.