Developmental Delay / Mental Retardation

• Web Sites: Mental Retardation and Developmental Disabilities, Waisman Center
• MUMS (Mothers United for Moral Support) - National Parent-to-Parent Network
• March of Dimes
• Easter Seals (search for state)
• The Arc, includes sibling support project
• National organizations
• International organizations

Developmental Delay Resources
4401 East West Highway, Suite 207, Bethesda, MD 20814
Phone: (301) 652-2263 - Fax: (301) 652-9133
Web site: www.devdelay.org/

Foundation For People with Learning Disabilities
7th Floor, 83 Victoria Street, London, SW1H OHW
Telephone:+ 44 (0) 20 7802 0316 - Fax: + 44 (0) 20 7802 0301
Email. nmorris@fpld.org.uk
Website: www.learningdisabilities.org.uk

An evaluation by a board certified geneticists in a genetic clinic will help determine whether developmental delay or mental retardation is part of a specific condition, genetic, or if additional diagnostic studies are needed:

• Professional Genetics Societies
• Genetic clinics, centers, departments

See specific conditions (Chromosome anomalies, Cornelia de Lange syndrome, Cri-du-Chat (5p-), Down syndrome (Trisomy 21), Fragile-X syndrome, Lesch-Nyhan syndrome, Leukodystrophy, Lissencephaly, Maple syrup urine disease, Metabolic conditions, Mitochondrial conditions, Mucolipidosis, Mucopolysaccharidosis, Phenylketonuria (PKU), Prader-Willi syndrome, Rett syndrome, Tay-Sachs disease, Trisomy 18, Trisomy 13, Tuberous sclerosis, Williams syndrome, others):

A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | R | S | T | U | V | W | X

• support groups for categories of conditions
• support groups for chromosomal conditions
• individual to individual support
• government consumer health information
• genetic clinics (genetic counselor or clinical geneticist)
• siblings of children with genetic / rare conditions (includes sibling resources, books, newsletters, videos, and movies)
• sibling/ family member information
• other information (ADA, glossaries, etc.)
• searching the Internet
• international languages sites

References:

• Developmental Delay, typically used to describe a child who does not seem to be growing, developing, or progressing at expected rates or levels, Conditions in Young Children with Disabilities
• Mental Retardation: A Symptom and a Syndrome, FJBiasini, LGrupe, LHuffman, NWBray, Department of Psychology, University of Alabama at Birmingham
• Developmental Delay and Mental Retardation, Child Development Clinic, Utah Department of Health
• What is a developmental delay?, How Kids Develop
• Genetics of Mental Retardation, special issue, American Journal of Medical Genetics [Part C: Seminars in Medical Genetics], Volume 117C, Issue 1, 2003 [Online ISSN: 1096-8628 Print ISSN: 0148-7299]

   

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Genetics Education Center
University of Kansas Medical Center © 1995-2012
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu

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