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Family Support Groups

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CHARGE Syndrome Foundation Facebook Group

CHARGE Syndrome Support Group  (A Program of Lighthouse Guild) Connect with Parents in the CHARGE community to share information and find support. Join our free monthly CHARGE Syndrome Support Group. Open to parents/guardians from the USA, Canada, and other countries. This wonderfully supportive group meets monthly on Tuesdays via Zoom. This 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. Contact Sheri Stanger, CHARGE Syndrome Support Group Facilitator at SheriMed@aol.com. Call the Family Support Programs at 212-769-6318. Click here to register.

Birth to 3 Family Support Group Family Liaisons with the CHARGE Syndrome Foundation host a virtual support group for families with children aged birth – 3 years.  We recognize that this group goes through so much in the first 3 years of life and it can often feel isolating or overwhelming.  We want to offer a safe place where families can get together to connect, share, ask questions and get support with other families in the same boat. Meets monthly, virtually.  Click here for more information and to register.

Familia CHARGE Spanish Speaking Support Group. Meets monthly, virtually.

Western Region Support Group This is an opportunity for parents and caregivers of a child with CHARGE syndrome to build connections and support other CHARGE parents/caregivers in the region (AK, AZ, CA, HI, ID, MT, ND, NV, OR, SD, UT, WA, WY). Meets monthly, virtually. Click here to register.

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.

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

International Groups