The resource explores the challenges of communicating about complex care and offers strategies to create clear, consistent messaging that resonates with diverse audiences.
Resource Library
The CARE Down Syndrome Resource Library offers practical tools, tip sheets, and handouts designed to support primary care professionals in delivering high-quality care to individuals with Down syndrome.
Many of these resources are meant to be shared directly with patients and their families, helping to foster better communication, understanding, and collaboration. This library will continue to grow, with new materials added regularly to meet the evolving needs of both healthcare professionals and the Down syndrome community.
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Skin Condition Resources for Patients with Down Syndrome
Society for Pediatric DermatologyThis page offers downloadable informational handouts for individuals with Down syndrome at different life stages, detailing common skin conditions, their causes, and treatment options.
Sleep Apnea in People with Down Syndrome
Advocate Medical Group Adult Down Syndrome CenterThe article explains the types, symptoms, and treatment options for sleep apnea in individuals with Down syndrome, highlighting its high prevalence and impact on overall health and cognitive function.
Special Care Dentistry Association
Special Care Dentistry AssociationSpecial Olympics Inclusive Health Fundamentals Curriculum
Special OlympicsA self-paced program with short, evidence-based modules that help healthcare students and professionals learn to provide inclusive, high-quality care for people with intellectual and developmental disabilities (IDD).
Supported Decision-Making Tools
National Resource Center for Supported Decision-MakingThis resource offers guides, tools, and templates to assist individuals with disabilities, families, and supporters in understanding and implementing supported decision-making practices.
Supporting Positive Behavior in Children and Teens With Down Syndrome: The Respond but Don’t React Method
David S. Stein, Psy.D.This book explains how the unique brain functioning of individuals with Down syndrome influences behavior and provides proactive, consistent strategies to encourage positive behaviors at home, school, and in the community.
Talking End of Life with People with Intellecutal Disabilities
Talking End of LifeTalking End of Life ...with people with intellectual disability (TEL) explains how to teach people with intellectual disability about the end of life.
Testicular Cancer in Men with Down Syndrome
Advocate Medical Group Adult Down Syndrome CenterThis article explains why testicular cancer is more common in men with Down syndrome, outlines symptoms to watch for, and emphasizes the importance of annual physical exams for early detection. It also discusses treatment options, fertility considerations, and the role of undescended testicles in increased cancer risk.
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Alzheimer’s Disease in People With Down Syndrome
National Institute on AgingThis website explains why Alzheimer's disease is more common in individuals with Down syndrome as well as research in the Down syndrome and Alzheimer's disease field.
Common Characteristics of Adolescents and Adults with Down Syndrome
Advocate Medical Group Adult Down Syndrome CenterThis article provides an overview of self-talk, the groove, and other common characteristics of many people with Down syndrome.
The Primary Care Professional’s (PCPs) Guide to Women’s Health and Down Syndrome
National Down Syndrome SocietyThis guidebook is a comprehensive resource designed to educate PCPs about the nuanced healthcare needs of women with Down syndrome and provide strategies to care for this patient population.
GLOBAL Medical Care Guidelines for Adults with Down Syndrome
Global Down Syndrome FoundationThis resource provides comprehensive, evidence-based clinical guidelines to help healthcare professionals deliver personalized, high-quality primary care for adults with Down syndrome.