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Family Support Groups

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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.

National CHARGE tele-support group National CHARGE Tele-Support Group for parents/guardians of individuals with CHARGE syndrome. This bi-weekly support group is offered at no cost to participants through the Lighthouse Guild. To register for this program please visit https://www.lighthouseguild.org/patients-families/tele-support-services/support-for-parents/. On the Registration Form please write “CHARGE syndrome” in the Eye Condition box. For more information, contact Group Facilitator, Sheri Stanger at sherimed@aol.com, sherimed@aol.com

Spanish tele-support group – Contact Myrna Medina, Family Specialist, California Deafblind Services medinam66@sbcglobal.net

Palmetto CHARGERSminnie@chargesyndrome.org

Nevada Facebook Group

NY CHARGE Family Support Group suzanne.a.chen@gmail.com

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