About The Prenatal Disability Education Summit

The Prenatal Disability Education Summit was an event sponsored by the Joseph P. Kennedy, Jr. Foundation that was held on May 13, 2022 at Kennedy Krieger Institute at the Johns Hopkins Medical Campus in Baltimore Maryland. This event hosted about 60 invited stakeholders, representing the medical, advocacy, and public policy communities, to discuss the future of prenatal education about disabilities. The overall objectives of the Prenatal Summit included do the following:

  • Assess the current state of education about disabilities for expectant parents receiving a prenatal diagnosis.
  • Review collaborative accomplishments since the last Down Syndrome Consensus Meeting in 2008.
  • Establish collaborative goals in the areas of public policy, organizational policies/guidelines, research, and ethical practices for the next decade to ensure that families receive accurate, up-todate, and balanced information, resources, healthcare, and support they need following a diagnosis or screening results and to help families and clinicians better understand a more up-to-date vision of people living with disabilities.
  • Discuss best practices for building relationships between the advocacy and medical communities. Additional discussions about strategies for the education and training of medical and genetics professionals to better understand current life outcomes for people with disabilities.
  • Directory of stakeholders who want to continue to work collaboratively on disability education in the prenatal setting

To learn more about the outcomes of the conference, check out the report, and check out the action plan to learn about the progress we’re making in each area: