Policies from National Medical and Genetics Organizations Copy

The American College of Medical Genetics and Genomics (ACMG), the American College of Obstetricians and Gynecologists (ACOG), and the National Society of Genetic Counselors (NSGC) all offer guidelines on how to support expectant following a prenatal diagnosis of Down syndrome and other genetic conditions. These policies often give recommendations about what resources can be helpful and encourage clinicians to give referrals to national advocacy organizations. These guidelines can help you start conversations with medical professionals about how you are sharing resources with them that are recommended in their guidelines.

ACOG Practice Bulletin 88 says that Ob-gyns need to be well-informed about Down syndrome so that they can provide … “natural history” of Down syndrome​ and that referrals to national and local Down syndrome organizations can be “very helpful”​ 

The ACMG guidelines say that clinicians should provide Information on local support groups, printed material, books, and the option to contact a family raising a child with DS should be offered​. In addition, ACMG specifically lists Lettercase and Down syndrome Pregnancy as recommended resources.

The NSGC guidelines say that families benefit from a fair & balanced perspective, including the many positive outcomes of children with Down syndrome & their effect on the family​. Further, NSGC provides a comprehensive list of recommended resources, including resources from the Lettercase National Center.