Advocacy Groups and Down Syndrome/Genetic Condition Information Acts Copy

  • Orgs have done mailings for DS awareness month outlining the acts and how to refer families.  
  • Also co-funded and attended regional ACOG or ACMG meetings to have booths to educate professionals about new laws 
  • Washington state paid for Somalian and Korean translations, sent out newsletters and social media, DPH created a web page bought books to disseminate in partnership with Lettercase, and tracked data; state creates joint webinars with advocacy orgs 

Implementing the new Bill after it was passed in MA 

  • The Commissioner of the MA department of Public Health mailed a memo to 1,600 OB/Gyns, geneticists, maternal, and fetal medicine specialists, genetic counselors, and neo-natal and peri-natal practitioners to inform them about the new law. 
  • The memo directs individuals who deliver a diagnosis of Down syndrome to expectant couples of a new DPH webpage.
  • The prenatal booklet “Understanding a Down syndrome Diagnosis” is made available free of charge through the Health Promotion Clearinghouse.