5. Are there support groups for families with a child having CHARGE Syndrome?

References:

Insights:

There are several supports for families with a child having CHARGE Syndrome or for those who desire to know more. The National Organization for Rare Disorders, Inc. has many good sources to contact for finding more information on CHARGE Syndrome. Families and teachers can use these to help work with there kids by knowing more about the effects of the disorder.

Other helpful sources that I’ve found for families and teachers include the websites and organizations listed below. Check them out!

 

 

Websites :

Family Village: A global community of disability-related resources
- This site is specifically for CHARGE Syndrome, however by using the home page you can research several other disorders.

Minnow’s Place
- This is the website of a mother who has a child with CHARGE Syndrome. Great for parental perspectives.

The Texas School for the Blind and Visually Impaired
webpage – The specific address that you will link to is from a newsletter that focuses on CHARGE Syndrome. This page does an excellent job describing the characteristic and disorders related to CHARGE Syndrome.

The University of Kansas Medical Center – Information for Genetic Professionals – Charge Syndrome information
- This website is geared more toward professionals. It is quite informative by describing CHARGE Syndrome and the symptoms which accompany it.

 

Organizations:

The Charge Syndrome Foundation
2004 Parkade Boulevard
Columbia, MO 65202-3121
(800) 442-7604 for families
(573) 499-4694 for professionals


Contact Information:



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