Information and Resources from ASI

 

ASI EXECUTIVE DIRECTOR
Robin Marshall
14 Whitney Farm Road
Mount Desert, ME  04660  USA
ASIRobin@hotmail.com


ASI FAMILY OUTREACH COORDINATORS
Carrol Lyon - United Kingdom
carrol_lyon@hotmail.com 

Gina Denbow - Canada
codkate@nbnet.nb.ca

Debbie Hughes - New Zealand
debbie_hughes@xtra.co.nz

 

 

JAMIE'S RESOURCE LIST FOR THE VISUALLY IMPAIRED
Text Format
PDF Format (.pdf)
Other useful organizations, information and resources

 

Please note: we do not control or endorse the information presented on these Web sites. They are listed for informational purposes only.
Find addional resources on this page relating to:

• General
• Vision
• Hearing
• Diabetes
• Cardiomyopathy
• Gastroenterology
• other information about Alstrom Syndrome

General

• Alliance of Genetic Support Groups
• National Organization for Rare Disorders (NORD)
• Canadian Organization for Rare Disorders (CORD)
• Special Child magazine
• Information for Genetic Professionals, University of Kansas Medical Center
• Council for Exceptional Children
• The Family Resource Center
• Family Village
• Family Voices
• Information Resources for Special Children
• National Fathers' Network
• National Parent Network on Disabilities
• NICHCY: National Information Center for Children and Youth with Disabilities
• Parenting Special Needs
• MUMS Parent-to-Parent Network
• National Clearinghouse for Infants with Disabilities & Life-Threatening Conditions (USA) 1-800-922-9234
• National Parent to Parent Support and Information System (USA) 1-800-651-1151

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Vision

• Blindness Resource Center
• National Federation of the Blind
• Foundation for Fighting Blindness
• Canadian National Institute for the Blind: C.N.I.B.
• Braille on the internet
• Canine Companions for Independence

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Hearing

• Rockefeller University - hearing loss
• National Technical Assistance Consortium for Children and Young Adults Who Are Deaf-Blind
• Deaf-Blindness Resources on the Web
• Deafchild International

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Diabetes

• Juvenile Diabetes Foundation
• American Diabetes Association

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Cardiomyopathy

• Children's Cardiomyopathy Foundation
• e-medicine: Dilated Cardiomyopathy
• American Heart Association - Cardiomyopathy
• Cardiomyopathy Association - UK

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Gastroenterology

• Children's Liver Alliance
• PAGER (Pediatric/Adolescent Gastroesophageal Reflux Association)

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Other information about Alstrom Syndrome

• Online Mendelian Inheritance in Man (OMIM)
• PubMed and MEDLINE
• Gene Reviews

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