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Family Support Groups



CHARGE Syndrome Foundation Facebook Group

National Family Association for Deaf-Blind (NFADB) – This organization supports individuals who are deafblind and their families.

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

Nevada Facebook Group

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