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Get Support

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.

 

 

Find support as families that include an individual with CHARGE syndrome. Includes our Facebook Support Group, Birth-3-Year Parent-to-Parent Virtual Support Group, Regional Support Groups, and Familia CHARGE – a Spanish speaking support group.

 

 

The CHARGE Syndrome Foundation Family Assistance Programs were created in the Spring of 2020 in response to increased needs of families related to the COVID-19 pandemic.  Since their inception, the Foundation has supported over 100 families across the United States. Learn More

 

Adulthood

The Bulldog CHARGE Lab wants to provide an opportunity for adults with CHARGE to not only socialize, but also to have an opportunity to ask questions and discuss topics in a safe environment. They host monthly socials for individuals with CHARGE, aged 16 and older. Closed captioning and sign language interpreting will be provided.

For more information and to register, please email cap702@msstate.edu.

 

 

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.

 

 

The last day of February is World Rare Disease Day, an annual event that gives us the chance to come together, show our stripes, and raise awareness for more than 300 million people affected by rare disease globally. Click here to learn more and read our stories.

 

 

Organizations for People with Deafblindness

 

 

 

 

International Groups & Organizations

 

 

 


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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