The Networking Program is for one-on-one contact with other NBIA families. Participating families provide addresses, ages of affected individuals and the NBIA disorder they have. This is important information if you want to reach out to someone living nearby or with a similar diagnosis.
Our organization keeps names and addresses confidential unless a person (or parent) provides written permission for NBIA to send their name to other people (or families) affected by NBIA. Those indicating they want to be part of the Networking Program understand their information can be shared with others in the program.
Note: We will not add the names of third parties (i.e., teachers, social workers, etc.) to the NBIA Networking Program.