Because of a lapse in government funding, the information on this website may not be up to date, transactions submitted via the website may not be processed, and the agency may not be able to respond to inquiries until appropriations are enacted.

The NIH Clinical Center (the research hospital of NIH) is open. For more details about its operating status, please visit cc.nih.gov.

Updates regarding government operating status and resumption of normal operations can be found at OPM.gov.

Resources

The following resources may be of interest to people with Down syndrome (DS), their families, and those who provide care for people with DS. Please note that the DS Consortium member organizations also provide information, resources, and support related to DS; you should visit their websites for details.

Glossary of DS-Related Terms:
- English
- En español
Health Care & Other Care Guidance:
- A Promising Future Together: A Guide for New and Expectant Parents (National DS Society [NDSS])
- Aging & DS: A Health and Wellbeing Guidebook (PDF 8 MB) (NDSS)
- Alzheimer’s Disease & DS: A Practical Guidebook for Caregivers (PDF 10 MB) (NDSS)
- Children with DS: Health Care Information for Families (American Academy of Pediatrics [AAP])
- Clinical Report: Health Supervision for Children and Adolescents with DS (AAP)
- Data and Statistics on DS (Centers for Disease Control and Prevention [CDC])
- Growth Charts for Children with DS (CDC)
- Medical Care Guidelines for Adults with DS (Global DS Foundation [GDSF]; multiple languages & audiences)
- Oral Health & Developmental Disabilities (National Institute of Dental and Craniofacial Research, NIH)
Lettercase: Part of the National Center for Prenatal and Postnatal Resources
- Partners: The DS Collaborative
- Access DS Resources
MedlinePlus (National Library of Medicine, NIH)
- Down Syndrome
- Genetic Conditions: Down Syndrome (Medical Encyclopedia)
Support/Service Organizations
- AcceptAbility^® Gala (GDSF)
- Affiliate Directory (DS Affiliates in Action [DSAIA])
- Be Beautiful Be Yourself^® Fashion Show (GDSF)
- DS Community Programs (LuMind IDSC)
- DS World Magazine (GDSF)
- Family Care Toolkit (National DS Congress [NDSC])
- Family Connect (International Mosaic DS Association [IMDSA])
- Family Support Resources (National Task Group)
- Family Training Program, cultural competence & inclusion resources, emergency planning, training & webinars, etc. (Association of University Centers on Disabilities)
- Find a Special Olympics Program Near You (Special Olympics)
- Get Involved: Families (Special Olympics)
- Local & National Referrals (NDSS)
- Local & National Support Networks (NDSC)
- Parent Support (DS Diagnosis Network)
- Parent Webinar Series (NDSC)
- Self-Advocacy Column (IMDSA)
- Self-Advocacy Guide (DS International)
- Speaker Series on DS-Related Care (DS Medical Interest Group)
- Ways to Connect (LuMind IDSC)

Breadcrumb

Resources