Ds-connect is here!

The National Institutes of Health’s voluntary Down syndrome registry is up and running!  Ds-connect allows persons with Down syndrome and their parents and caregivers to directly impact the speed and cost of Down syndrome research.  The registry provides de-identified aggregate information to participants and researchers.  Best of all, registrants can choose to be contacted to participate in Ds research studies.  With recent medical developments, I believe there is a true urgency to discover as much as we can about Down syndrome, before the population dwindles to a level where we will no longer garner even the small amount of national funding we receive now.  I’m giddily imagining what can be accomplished when the Down syndrome community is given the power and ability to fuel this research.  Please, check it out, sign up, and tell all your friends with Down syndrome and the people who love them!

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