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Kansas Deaf-Blind Resources > Other Medical Conditions

Syndromes and Other Medical Conditions

Alport Syndrome

Alport syndrome is an inherited disease of the kidney that can also affect the inner ear (cochlea) and eye. It is caused by genetic mutations that affect the type IV collagen family of proteins. Type IV collagen is a major part of important tissue structures called basement membranes that are present in all tissues including the kidney, inner ear, and eye.
– The Alport Syndrome Foundation

For more information, visit:
Alport Syndrome Foundation – Hope, Action, Support

Batten Disease

Batten disease is a rare, fatal, inherited disorder of the nervous system that usually begins in childhood. The first symptom is usually progressive vision loss in previously healthy children followed by personality changes, behavioral problems and slow learning. Progressive loss of motor functions (movement and speech) start with clumsiness, stumbling and Parkinson-like symptoms; eventually, those affected become wheelchair-bound, are bedridden, and die prematurely.
– The Beyond Batten Disease Foundation

For more information, visit:
Beyond Batten Disease Foundation

CHARGE Syndrome

CHARGE syndrome is a recognizable genetic syndrome with known pattern of features. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects.
The CHARGE Syndrome Foundation

For more information, visit:
CHARGE Syndrome Foundation

Congenital Rubella Syndrome

For more information, visit:
https://rarediseases.info.nih.gov/diseases/4744/congenital-rubella

Cortical Visual Impairment

For more information, visit:
http://www.familyconnect.org/info/after-the-diagnosis/browse-by-condition/cortical-visual-impairment/123

For more information, visit:
Dandy-Walker Alliance
Goldenhar disease | Genetic and Rare Diseases Information Center …

Hunter Syndrome

For more information, visit:
Keratitis Ichthyosis Deafness Syndrome

Treacher Collins Syndrome

For more information, visit:
https://rarediseases.org/rare-diseases/treacher-collins-syndrome/

Turner Syndrome

For more information, visit:
https://rarediseases.org/rare-diseases/turner-syndrome/

Usher Syndrome Resources for Parent:

https://www.usher-syndrome.org/our-story/just-for-parents/welcome.html

Usher Syndrome Coalition

Tips for Teachers with Students with Usher Syndrome and for more information, visit:
https://www.cde.state.co.us/cdesped/sd-db_factsheetwp_tipsforteachers_usher

Wolf-Hirschhorn Syndrome

For more information, visit:
Wolf-Hirschhorn Syndrome | Genetic and Rare Diseases Information …

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