The Road We’ve Shared is determined to raise awareness and help find solutions for the
racial health and life expectancy disparities within the Down syndrome community.


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Racial disparities in Down syndrome


What we know:

  • A study reported by the CDC, using death records from 1968-1997, showed that people of color who have Down syndrome died at an alarmingly earlier age than their peers who were White.
  • U.S. Census studies of the general population for the same period show that the difference in life expectancy between the races was 5.2 years for women and 7.1 years for men. In the Ds community, the difference was 30 years for Blacks and 40 for “other” minorities (including Hispanics.)
  • Since the study was published in 2001, little if anything has been done to address this issue (that we know of).
  • The national Ds organizations are aware of the problem.
  • A new study published this year looked for possible medical causes for the disparities but found none.


What we think needs to happen:

  • We, as a community of concerned parents and caregivers, need to acknowledge the problem and come together to find solutions .
  • We need to raise awareness of the problem by sharing, posting, and talking about it.
  • New ways to collect health and death data need to be created in order to research the problem.
  • Researchers need to be made aware of the problem so they can design and implement new studies.
  • People of color who have Ds should be given the opportunity to advocate for themselves on this issue.
  • Local and national Ds organizations should be given the tools to broaden their presence and impact in communities of color.
  • Physicians and social service agencies should be educated on possible reasons for the problem and how to proactively address them.


Our articles about the issue:



Other articles:



Uncovering Racial Disparities in Down Syndrome:

Written by
Stephanie Santoro, MD