DSA is a resource center for your patients and families with a diagnosis of Down syndrome. We provide support to health care providers through online resources, patient education materials, and in-service presentations. Presentations can be tailored to meet the needs of health care professionals, students and staff.
Email Beth Gard, Medical Outreach Chair, for materials, to schedule a presentation, or for Grand Rounds.
Additional resources can be found below.
- Discussing Down Syndrome
- DS Health Care Guidelines
- Associated Conditions
- DS-Connect®: The Down Syndrome Registry
- Continuing Education
- Dr. Brian Skotko's Workshops
- People First Language
- Down Syndrome Diagnosis Information and Support Act
- Down Syndrome Diagnosis Information and Support Act Handout in Spanish
- DSA Guide for New Parents (English and Spanish)
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A physician’s guide to discussing Down syndrome with parents, including separate scenarios for prenatal and postnatal both with confirmed diagnosis or suspicion of DS.
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The Down Syndrome Health Care Guidelines follow an individual’s development from birth through adulthood and provide information about potential health concerns at each stage.
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People with Down syndrome are at increased risk for certain health problems compared to the general population. This section offers information about these health issues.
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Professional Portal: Researchers, clinicians and other professionals can access de-identified aggregate data in DS-Connect® to identify target populations for study or trial planning or recruitment. You can also contact the DS-Connect® Coordinator to communicate with registrants on your behalf regarding potential candidacy for clinical trials and research studies.
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Each month, NDSS provides a free webinar to anyone who is interested in learning more about Down syndrome and related topics such as health, education, research and family life.
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Dr. Skotko has dedicated his professional energies toward children with cognitive and development disabilities. He offers several webinars regarding healthcare updates, sibling issues, clinical metabolism and diagnosis of DS.
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From Disability Is Natural, how to put the person before the diagnosis.
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The bill passed on July 21, 2016, defines Down Syndrome as a chromosomal condition caused by cell division that results in the presence of an extra whole or partial copy of chromosome 21. The bill requires the Department of Health and Human Services (DHHS) to make available up-to-date information about Down Syndrome that has been reviewed by medical experts and Down syndrome organizations. DHHS is also required to post this information on its web site and shall provide an information support sheet. This bill requires health care practitioners involved with prenatal or postnatal screening or diagnostic tests that detect Down syndrome to deliver to the parents the information support sheet with the above information made available by DHHS.
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In Spanish: Información sobre el síndrome de Down para padres nuevos y futuros
