NBIA findings and consultation folder

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

The "NBIA findings and advice folder" developed by Hoffnungsbaum is intended to be a practical aid in everyday life and to support you on your journey with NBIA. Our findings and advice 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 illness and treatment. The included organization system, which you can customize and add to, provides you with orientation.
  • The second part of the folder is a guide and contains information material on the disease and treatment 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 to hand - for your own overview and that of your treating doctors, therapists, relevant 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

Subscribe to our Hoffnungsbaum newsletter!

With our newsletter e-mails you will receive valuable information about NBIA. If you would like to receive additional information on individual NBIA variants or special information for researchers/clinicians in addition to the general newsletter, please click here: Subscribe to additional information

Privacy policy

You have successfully registered!