In our lifetime, the single most dramatic change effected by our community has been the astounding improvement of the health of people with Down syndrome. Through the caring innovation of medical professionals, the typical lifespan of an individual with Down syndrome now approaches 60 years of age, the average for all people. Equally important, advancements in cardiology, nutrition, the behavioral sciences, and more have opened a high quality of life for people with Down syndrome.
Some communities are fortunate to have Down syndrome clinics or programs nearby. To find the one nearest you, visit our clinic listing page.
Pediatric Healthcare Guidelines & Growth Charts
AAP Health Care Information for Families
You can print a checklist for your child’s age, to take with you to your pediatrician here:
- Checklist – prenatal
- Checklist – birth to 1 month
- Checklist – 1 month to 1 year
- Checklist – 1 year to 5 years
- Checklist – 5 years to 13 years
- Checklist – 13 years to 21 years
You can also print the Down Syndrome Growth Charts, updated by the CDC in November 2015
- Boy, Head circumference, Birth to 36 mos
- Boy, Length, Birth to 36 mo
- Boy, Weight, Birth to 36 mos
- Boy, Weight for Length, Birth to 36 mos
- Girl, Head circumference, Birth to 36 mos
- Girl, Length, Birth to 36 mos
- Girl, Weight, Birth to 36 mos
- Girl, Weight for Length, Birth to 36 mos
- Boy, Height, 2 to 20 years
- Boy, Weight, 2 to 20 years
- Girl, Height, 2 to 20 years
- Girl, Weight, 2 to 20 years
GLOBAL Medical Care Guidelines for Adults
The GLOBAL Medical Care Guidelines for Adults with Down Syndrome provide first-of-its-kind, evidence-based medical recommendations to support clinicians in their care of adults with Down syndrome. This life-changing resource as published in JAMA covers 9 topic areas deemed critically important for the health and well-being of adults with Down syndrome and outlines critical future research needs.
NDSC is proud to be a key supporter of GLOBAL’s work to bring these to clinicians and families. When you visit the GLOBAL webpage you can download the full guidelines, the guidelines toolkit (a great checklist to take to your appointments), and read more about the authors & workgroup.
Medical Care Resources
Information on associated medical concerns related to individuals with Down syndrome can be found with NDSC's partners such as:
- LuMind's searchable Digital Resource Library with condition-specific resources on alzheimer's disease, regression disorder, and skin conditions.
- DS-Connect®: The Down Syndrome Registry enables people with Down syndrome and their families to contribute to research studies, connect with Down syndrome researchers, and find resources and community events. Join here. English flyer and Spanish flyer.
- Global Down Syndrome Foundation pediatric and adult medical care guidelines as well as specific recommendations for diabetes celiac disease and behavior.
- The Adult Down Syndrome Center also has a searchable list of resources.
- Project ECHO - Share with your Doctor! Many people with Down syndrome do not have access to a specialty clinic for people with Down syndrome. The DSMIG-USA Project ECHO is a monthly virtual meeting developed to support health care professionals who care for individuals with Down syndrome. This program provides an opportunity for health care professionals to seek input from expert professionals with significant experience in caring for people with Down syndrome. Any health care professional of an individual with Down syndrome is invited to present a case and/or attend. There is no cost to participate, and attendees can earn continuing education credits for attending. Additional information is also available on the DSMIG-USA website.
- DSC2U.org - Get a personalized health and wellness checklist for your loved one with Down syndrome backed by Harvard research. Sign up at DSC2U.org today.
- National Down Syndrome Society (NDSS) - NDSS develops tailored and accessible medical resources for individuals with Down syndrome, families, caregivers, and healthcare professionals that address topics across the lifespan from prenatal diagnosis to end of life.
Other
The National Task Group on Intellectual Disabilities and Dementia Practices
The NTG is a not-for-profit organization charged with ensuring that the interests of adults with intellectual and developmental disabilities who are affected by Alzheimer’s disease and other causes of dementia – as well as their families and friends are taken into account.
