CHARGE Syndrome Foundation Facebook Group
National Family Association for Deaf-Blind (NFADB) – This organization supports individuals who are deafblind and their families.
Family to Family Communities (F2FC) – F2FC is a collaborative project sponsored by State Deaf-Blind Projects, NCDB, and NFADB. F2FC brings families together to connect, share information and resources, and offer support to one another in the journey of supporting their family members with deaf-blindness.
Texas CHARGERS – This is a group of Texas families, friends, and professionals who are dedicated to helping children and young adults who live with CHARGE syndrome.
Lighthouse Guild Tele-Support Group for Parents of Children with CHARGE Syndrome – This tele-support group provides a safe space where parents can build a support network to voice concerns, ask questions, share experiences, and hear from professional guest speakers. Meetings are held once a month and professionally facilitated by Sheri Stanger, MA, EdM. To join this tele-support group, please fill out the enrollment form, and the group facilitator will contact you with more details. For more information, contact FamilySupport@lighthouseguild.org
Spanish tele-support group – Contact Myrna Medina, Family Specialist, California Deafblind Services
Palmetto CHARGERS – Contact Minnie Lambert for more information
NY CHARGE Family Support Group – Contact Suzanne Chen for more information
NYPADB (NY Parent Association for Deaf-Blindness)
Parents of Infants and Toddlers Facebook group
Sense is a UK charity supporting and campaigning for people who are deafblind and those with sensory impairments
If you would like your group listed here, email info@chargesyndrome.org
