We want to hear from you! NDSS is hosting an Externally-Led Patient Focused Drug Development (EL-PFDD) meeting with the U.S. Food and Drug Administration (FDA) on June 2, 2026, at 10 a.m. ET, about Down syndrome-associated Alzheimer’s disease (DS-AD).
The goal of the virtual meeting is to show the FDA and other decision makers how DS-AD impacts the lives of adults with Down syndrome and their families. Topics include the symptoms of DS-AD, individual experiences with available treatments, and hopes for future therapies. The insights shared during the PFDD meeting will help inform future regulatory policies to better reflect the unique challenges that Alzheimer’s disease has on our community.
You are invited to participate in several ways:
1. Attend the meeting from your own phone or laptop, and participate during the meeting by answering poll questions, calling in with comments, or emailing responses to be read on-air.
2. Submit comments before the meeting by completing our form.
3. If you cannot virtually attend on June 2, there is still an opportunity to make your voice heard. You can submit comments online until July 1, which will be aggregated and added to the Voice of the Patient Report.
Register for the NDSS EL-PFDD Meeting on June 2
Share Your Experiences - Submit Your Comments for the EL-PFDD Meeting
These discussion questions will be 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 2, 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?
Informational Webinar Recording
Watch this informational webinar recording about the upcoming EL-PFDD meeting! Associates from Hyman, Phelps & McNamara, P.C. will share opportunities for participating, listening, and contributing to the upcoming Externally Led NDSS-sponsored Patient-Focused Drug Development Meeting (EL-PFDD) with the United States Food & Drug Administration (FDA) on June 2.
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