NBIA findings and consultation folder

A practical help for everyday life - collect all findings and current info about your NBIA disease.

The "NBIA findings and advice folder" developed by Hoffnungsbaum is intended to be a practical aid in your everyday life and to support you on your journey through life with NBIA. Our findings and consultation folder is divided into two parts:

  • The first part is for documentation. Here you can file and enter medical findings and treatment documents of your child or family member, your observations on the course of the disease and treatment. The included filing system, which you can adapt and add to individually, provides you with orientation.
  • The second part of the folder represents a guide and contains information material on the disease and therapy options, on doctors and clinics, on our self-help work, etc. This means that you have important documents and information bundled in a single folder and 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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