The CHARGE Syndrome Foundation has many ways to offer support and resources to parents, professionals, and people with CHARGE syndrome. Our local, national, and international partners provide an array of services to help the CHARGE syndrome community.
The CHARGE Syndrome Foundation, along with our partners, can assist with finding services and programs such as: new parent support and education, family meetings, sibling and grandparent support, regional and national conferences, partnerships with CHARGE Syndrome Clinics, training for medical professionals and educators, and advocacy. You can start here.
As parents of individuals with CHARGE, we’ve all been there and we can help you make sense of the challenges your son, daughter, family member, or friend might face.
New parents can find out more here.
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. Click here for more information.
The CHARGE Syndrome Foundation Family Assistance Program (FAP) was created in the Spring of 2020 in response to increased needs of families related to the COVID-19 pandemic. Since its inception, the Foundation has supported over 100 families across the United States. Learn More
Get direct support from a member of our team who can answer your questions and direct you to available resources in your area, including parent contact lists for local families and a list of professionals familiar with CHARGE. Email info@chargesyndrome.org.
Our CHARGE family has experienced the loss of far too many amazing individuals with CHARGE. Every life is precious, and we grieve together as a community. It is important for everyone to know that the loss of a child, grandchild, sibling, relative, or friend does not and should not signal the end of your relationship with the Foundation. You will always be part of our CHARGE family. Please click here to access resources, support groups, and ways everyone in our CHARGE family can help.
Emergency Financial Resources
A list of Organizations that help with emergency relief for families.
State Specific Resources
The Family Liaison Project is a model of collaboration to improve the Foundation’s outreach to both families and professionals at the national level. The position will be used to build relationships, network, collaborate and disseminate information. Click here to find your state’s Family Liaison.
State and National Deafblind Projects – the state and national projects focused on deafblindness support efforts to train teachers about the unique needs of students who are deafblind. Technical assistance from both state and national Deafblind Projects are the primary way for local districts to get the training and support needed to effectively educate our children.
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