NIH must launch INCLUDE Project to fund Down syndrome research across lifespan

What does this do?

This bill would direct the National Institutes of Health (NIH) to officially create and run a research program called the INCLUDE Project. The program would fund studies on Down syndrome across a person's entire life, support clinical trials that include people with Down syndrome, and research conditions that often occur alongside it, such as Alzheimer's disease and autoimmune disorders. NIH would also be required to coordinate across its agencies to avoid repeated work and to consult regularly with patient advocates and those directly affected by Down syndrome.

Who does it affect?

This bill most directly affects people with Down syndrome, their families, and caregivers, as well as the medical and research communities that work with them. People interested in related conditions like Alzheimer's disease may also be affected, since findings from this research could apply more broadly.

Why does it matter?

If passed, NIH would be legally required to run this program, report to Congress every two years on research activity and real-world results, and involve affected communities in setting research priorities. Without the bill, no such formal requirement exists.

Where does it stand?