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New Diagnosis

Welcome! You may be feeling shocked, afraid, and confused, but you’re not alone. 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.  We invite you to take these first steps as you begin to learn more about CHARGE and what the Foundation offers families in terms of support. Most importantly, welcome to our family.


Download our New Parent Packet  reg 

green-lineRegistro de padres

Additional Resources

Explore the website – you’ll find a lot of helpful information, including the following and much more:

CHARGE Syndrome Management Manual – The CHARGE Syndrome Management Manual for Parents breaks down CHARGE into some of its components. The Medical sections are by body system, for physicians and for parents. The Developmental sections include information about development and education, with special emphasis on sensory deficits. (Also available in Spanish)

Priorities for New Families Video – Learning your child has CHARGE syndrome can be overwhelming. In this video, Dr. Susan Wiley offers new parents advice on how to balance medical concerns and bonding with their child.

CHARGE Accounts Newsletters – A quarterly newsletter published by the CHARGE Syndrome Foundation primarily for parents of children with CHARGE syndrome. Information should also be helpful to medical and educational professionals working with individuals who have CHARGE. Included with Foundation membership.

Past CHARGE Conference – Click here to find links to past Conferences and papers presented.

Webinars 

Welcome Package – The CHARGE Syndrome Foundation offers new families direct support and resources as they navigate the complex needs of an individual with CHARGE.  As part of our welcome to the CHARGE community, our Family Assistance Program provides a special Foundation welcome package to families of individuals with CHARGE who have recently been diagnosed. Click here to connect with a Foundation representative, to request your welcome package.

Note: Family must reside in the US to receive this package. 

connections

 

Make connections: a great way to learn about CHARGE syndrome is to connect with and learn from other parents and young adults. Reach out to your State Family Liaison. You’ll find a supportive, active, welcoming community on our Facebook group.

 

 

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