The leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Society
8 E 41st Street, 8th Floor
New York New York 10017
[email protected] 


Based on the 1999 Down Syndrome Health Care Guidelines for Individuals with Down Syndrome as published in Down Syndrome Quarterly (Volume 4, Number 3, September, 1999, pp. 1-16.) 
  • TSH and T4-Thyroid Function Test (annual).  
  • Auditory testing (every 2 years).  
  • Cervical spine x-rays (as needed for sports); check for atlanto-axial dislocation.  
  • Opthalmologic exam, looking especially for keratoconus & cataracts (every 2 years).   
  • Clinical evaluation of the heart to rule out mitral/aortic valve problems. Echocardiogram-ECHO (as indicated).  
  • Reinforce the need for subacute bacterial endocarditis prophylaxis (SBE) in susceptible adults with cardiac disease.  
  • Baseline Mammography (40 years; follow up every other year until 50, then annual).  
  • Pap smear and pelvic exam (every 1-3 yrs. after first intercourse). If not sexually active, singlefinger bimanual exam with finger-directed cytology exam. If unable to perform, screen pelvic ultrasound (every 2-3 years). Breast exam (annually).  
  • General physical/neurological exam. Routine adult care.  
  • Clinical evaluation for sleep apnea.  
  • Low calorie, high-fiber diet. Regular exercise. Monitor for obesity.  
  • Health, abuse-prevention and sexuality education. Smoking, drug and alcohol education.   
  • Clinical evaluation of functional abilities (consider accelerated aging); monitor loss of independent living skills.  
  • Neurological referral for early symptoms of dementia: decline in function, memory loss, ataxia, seizures and incontinence of urine and/or stool.  
  • Monitor for behavior/emotional/mental health. Psych referral (as needed).  
  • Continue speech and language therapy (as indicated).  


  • Buddy Walk
  • NDSS Yourway
  • NDSS DS-Ambassadors