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Down Syndrome - Services & Other Resources
Information & Support
For Parents and Patients
Down Syndrome (Genetics Home Reference)
This site, sponsored by the National Library of Medicine, offers a wealth of information and links to more information about
Down syndrome. The information is aimed at consumers/patients/families.
Down Syndrome (MedlinePlus)
From the National Library of Medicine and National Insitutes of Health, offers many links to high-quality sources of information
for patients and their families.
Down Syndrome - Health Issues
Site developed and edited/authored by a pediatrician, Len Leshin, MD, who has a son with Down syndrome. Includes a number
of essays by experts about specific health topics and provides other useful links.
Down Syndrome Information Network
The Down Syndrome Information Network offers a range of information resources and online services to the international Down
syndrome community. It aims to provide information and services for families, carers, professionals and researchers worldwide.
Down Syndrome Issues and Information (down syndrome online)
An extensive series of comprehensive reference resources examining issues for people with Down syndrome from birth to adulthood.
Living with Down Syndrome
(
951 KB)
This 34 page document provides information about Down syndrome; family and school issues; People First and cultural issues;
and more from The Down Syndrome Educational Trust.
Support
Down Syndrome resources
Resource and information page for Down Syndrome from Family Village.
International Foundation for Genetic Research (The Michael Fund)
Advocacy organization aimed at fund-raising for research, improving care and education of children with DS, and right-to-life
issues.
National Down Syndrome Congress
The NDSC, a membership organization, offers parent resources, including a "new parent package" of information, as well as
news and events, government activities, and information on self-advocacy.
The International Mosaic Down Syndrome Association
Aims to assist any family or individual whose life has been affected by mosaic Down syndrome.
Utah Down Syndrome Foundation
A non-profit organization, established in 1977, to provide support, training, counseling, and education to individuals with
Down syndrome, their parents, families, and the community. This volunteer organization has 14 chapters throughout the state.
Utah Parent Center
A statewide non-profit organization, founded in 1984, to provide training, information, referral and assistance to parents
of children and youth with ALL disabilities, including physical, mental, hearing, vision, learning, behavioral and emotional.
Staff consists primarily of parents of children and youth with disabilities. The Center provides information on support and
advocacy for families of children with special health care needs.
For Professionals
Committee on Genetics, American Academy of Pediatrics
Committee on Genetics studies and makes recommendations to the Board of Directors on recent advances in genetics and provides
support to chapters on state legislative issues as they relate to genetics.
Information for Healthcare Professionals (National Down Syndrome Society)
Physician-oriented information from the National Down Syndrome Society. This website offers a downloadable "Guide for New
and Expectant Parents."
Trisomy 21 (OMIM)
Extensive review of the literature, including clinical features and genetics, from the Online Mendelian Inheritance in Man
site, hosted by Johns Hopkins University, providing technical information for providers on genetic disorders, links to MEDLINE,
and links to other scientific information and sites.
Patient Education
Altaoaxial Instability Parent Handout
Dental Care for the Patient with Down Syndrome:
Toilet Training and Down Syndrome (National Down Syndrome Society)
The NDSS offers this guide on their website as a guide to determine toileting readiness and teaching toileting skills. Includes
simple images that may be used as visual cues. This guide may be helpful in teaching toileting skills to any child with a
developmental disability.
Tools
Down Syndrome Checklist
( 30 KB)
Checklist of recommended screening evaluations through out childhood that can be printed and placed in the patients medical
chart to monitor patient care.
Down Syndrome Growth Charts (Boys, English measures)
( 247 KB)
Printable growth charts for height, weight, and head circumference for children with trisomy 21.
Down Syndrome Growth Charts (Boys, Metric)
( 251 KB)
Printable growth charts for height, weight, and head circumference for children with trisomy 21.
Down Syndrome Growth Charts (Girls, English measures)
( 246 KB)
Printable growth charts for height, weight, and head circumference for children with trisomy 21.
Down Syndrome Growth Charts (Girls, Metric)
( 247 KB)
Printable growth charts for height, weight, and head circumference for children with trisomy 21.
Services
Early Intervention Programs
See all Early Intervention Programs services providers (33) in our database.
General Dentistry for CSHCN
See all General Dentistry for CSHCN services providers (115) in our database.
Gynecology (Ped/Adol, Special Needs)
See all Gynecology (Ped/Adol, Special Needs) services providers (42) in our database.
Pediatric Condition-Specific Clinics
See all Pediatric Condition-Specific Clinics services providers (16) in our database.
Pediatric Endocrinology
Division of Pediatric Endocrinology,
more info...
615 Arapeen Dr., Suite 100
Salt Lake City, UT 84108
Phone: 801-581-7761
Fax: 801-587-3920
http://healthcare.utah.edu/utahdiabetescenter/pediatric/endocrinology.html
See all Pediatric Endocrinology services providers (2) in our database.
Pediatric Gastroenterology
See all Pediatric Gastroenterology services providers (2) in our database.
Pediatric Immunology/Rheumatology
See all Pediatric Immunology/Rheumatology services providers (6) in our database.
Pediatric Infectious Disease
See all Pediatric Infectious Disease services providers (2) in our database.
Pediatric Medical Genetics
See all Pediatric Medical Genetics services providers (4) in our database.
Pediatric Neurology
Pediatric Neurology,
more info...
100 N. Mario Capecchi Dr.
Salt Lake City, UT 84158
Phone: 801-662-5696
Fax: 801-587-7539
http://medicine.utah.edu/pedsneurology/
See all Pediatric Neurology services providers (3) in our database.
Schools for the Deaf & Blind
See all Schools for the Deaf & Blind services providers (5) in our database.
For other services related to this condition, browse our Services categories or search our database.