NBIA Findings and Consultation Folders

A practical aid for everyday life – collect all findings and current information about your NBIA disease.

The Hoffnungsbaum The "NBIA Findings and Counselling Folders" are intended to be a practical aid to you in everyday life and to support you on your journey through life with NBIA. Our report and consultation folder is divided into two parts:

  • The first part is for documentation. Here you can file and enter medical findings and treatment records of your child or relative, your observations on the course of the disease and treatment. The included organisation system, which you can individually adapt and add, offers you orientation.
  • The second part of the folder is a guide and contains information material about the disease and treatment options, about doctors and clinics, about our self-help work, etc. This allows you to bundle important documents and information in a single folder and have them quickly at hand – for your own overview and that of your treating doctors, therapists, responsible health insurance companies, teachers, etc.

If you are interested in a copy of our findings and consultation folder or would like further information please contact us. The findings and consultation folder is a free service for all NBIA families. However, we would be very pleased about a donation. We also want to revise and improve the folder continuously according to your ideas and experiences. Please let us know your suggestions for changes and wishes.

Photos: Noah Rusch

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