Down syndrome and Alzheimer's disease

A generation ago, the Down syndrome community helped scientists understand how genetics play a role in the development of Alzheimer’s disease.

Today, when more than 90% of the Down syndrome population receive an Alzheimer’s diagnosis in their lifetime, this terrible disease is a near certainty for people with Down syndrome. Thankfully, hope is on the horizon – in the form of recently-developed drug therapies that slow the progression of Alzheimer’s disease.

But in spite of the devastating prevalence of early onset Alzheimer’s disease among people with Down syndrome, and our community’s early support of research that led to the new Alzheimer’s drug therapies, those drugs are unavailable to people who have Down syndrome and Alzheimer’s disease.

In fact, researchers don’t even know if the new drugs are safe for people with Down syndrome, because no one with Down syndrome has participated in any of the many rounds of safety and efficacy clinical trials that have taken place to date.

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Amyloid Precursor Protein gene (APP)

Our community petition is raising awareness of this inequity with the hope that changing the playing field for people with Down syndrome in respect to Alzheimer’s disease will have a permanent effect on our community’s access to future breakthrough therapies for all diseases that impact people with Down syndrome.

Sign the Petition for Equal AccessSign the Petition for Equal Access

Inequity in the News

As the community and the wider public come to understand the barriers that face people with Down syndrome and Alzheimer’s disease, it is gratifying to see the media paying attention to this important issue.

June 2024
Down syndrome community will see a clinical trial for Alzheimer’s drug

October 2023
Down syndrome families’ fight for access to Alzheimer’s trials, treatments

September 2023
People with Down syndrome deserve access to Alzheimer’s treatment
OpEd, The Boston Globe

May 2023
Clinical trials for Alzheimer’s treatments need to include people with Down syndrome
First Option, STAT

March 2023
Alzheimer’s meds are here. But for the Down syndrome community, it’s still the 1980s
Fierce Biotech

Sign the Petition for Equal AccessSign the Petition for Equal Access

Still learning about DS-AD?

We invite you to learn more about the topic and discuss DS-AD with your loved one’s physician.

Resource List:

Access 80 DS-AD resources in myDSC, our free digital resource library

Learn more about the barriers individuals with Down syndrome face in accessing the newest breakthrough Alzheimer’s drugs.

Key Updates for the Down Syndrome Community: Accessing the new Alzheimer's Drugs

Ready to get into research? Learn about our Life-DSR study taking place now. Enrollment is still available in certain areas.

Learn More: Life-DSR Study