The goal of the EL-PFDD virtual meeting on June 2, 2026, was to show the FDA and other decision makers how DS-AD impacts the lives of adults with Down syndrome and their families. Topics included the symptoms of DS-AD, individual experiences with available treatments, and hopes for future therapies. The insights shared during the EL-PFDD meeting will help inform future regulatory policies to better reflect the unique challenges that Alzheimer’s disease has on our community.
Watch the recording and submit comments by July 1 below!
Share Your Experiences - Submit Your Comments by July 1
These discussion questions were addressed in the EL-PFDD meeting on June 2 with the U.S. Food and Drug Administration (FDA) regarding DS-AD. If you would like to submit a comment or share your experience, please use the comment box below the questions. Your answers may be included in the EL-PFDD Voice of the Patient report as your first name and last initial. You can answer one question, or you can answer all questions when you submit your comment. The comment period is open until July 1, 2026.
Questions on DS-AD Symptoms and Daily Impact:
1. Of all the symptoms and health effects of DS-AD, which symptoms have the most significant impact on you or your loved one’s life?
2. How does DS-AD affect you or your loved one on best and on worst days? Describe your or your loved one’s best days and worst days.
3. How have your or your loved one’s symptoms changed over time? How has the ability to cope with the symptoms changed over time?
4. Are there specific activities that are important to you or your loved one that you/they cannot do at all or as fully because of DS-AD?
5. What do you fear the most as you or your loved one gets older? What worries you most about your or your loved one’s condition?
Questions on Current and Future DS-AD Treatments:
1. What are you currently doing to manage your or your loved one’s DS-AD symptoms?
2. How well do these treatments treat the most significant symptoms and health effects of your or your loved one’s DS-AD?
3. What are the most significant downsides to your or your loved one’s current treatments and how do they affect daily life?
4. Short of a complete cure, what specific things would you look for in an ideal treatment for DS-AD?
5. What factors would be important in deciding whether to participate in a new research trial?
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