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Diagnosis-Specific Resources

A wide variety of groups and organizations exist that may provide information and support for individuals with certain conditions as well as the professionals who work with them. Many of these links contain pages with helpful links to other resources. While this list is not comprehensive, it may be a good place to start when searching for more information.

Inclusion on this list does not imply endorsement by CCSHCN. Other resources may be available in your area.



Asthma and Allergy Foundation of America

Allergy and Asthma Network Mothers of Asthmatics

American Lung Association of Kentucky


Cerebral Palsy

United Cerebral Palsy Association

Kennedy-Krieger Institute


Cleft Lip and Palate

Cleft Palate Foundation




FACES: The National Craniofacial Association

MyFace - National Foundation for Facial Reconstruction

Children’s Craniofacial Association

Craniosynostosis & Positional Plagiocephaly Support, Inc.


Cystic Fibrosis

Cystic Fibrosis Foundation

KY/West Virginia Chapter: CFF



InfantSEE Project

Kentucky Council of the Blind



American Heart Association

Kids with Heart

National Heart Lung and Blood Institute Information Center

National Marfan Foundation



National Hemophilia Foundation

Kentucky Hemophilia Foundation

Hemophilia Federation of America

World Federation of Hemophilia



Children's Hemiplegia and Stroke Association

The International Rett Syndrome Foundation

National Institute of Neurological Disorders

United Leukodystrophy Foundation



National Institute of Neurological Disorders



American Amputee Foundation

Amputee Coalition of America

Muscular Dystrophy Family Foundation

National Marfan Foundation



Kentucky Commission on Deaf & Hard of Hearing

Hearing Loss Association of Kentuckiana

Kentucky Association of the Deaf

American Society for Deaf Children

Telecommunications for the Deaf, Inc.


Rheumatology (JRA)

Arthritis Foundation (Kentucky Chapter)



National Scoliosis Foundation


Spina Bifida

Spina Bifida Association of Kentucky

American Syringomyelia Alliance Project


Last Updated 12/15/2016