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


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