- National Family Association for Deaf-blind
- National Center on Deaf-blindness
- Helen Keller National Center for Deaf-Blind Youth and Adults
- Contact your state Deafblind Project
- Council for Parent Attorneys and Advocates
- Usher Syndrome Coalition
- CHARGE Syndrome Foundation
- Ava’s Voice
- Usher Syndrome Society
- Hear See Hope
- Family-to-Family Communities (F2FC)