NDSS Externally Led Patient-Focused Drug Development (EL-PFDD) Meeting

An older woman with Down syndrome looks at a smart phone with an elderly woman sitting in a walker

The research team at NDSS is excited to share that we will be hosting an Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting with the U.S. Food and Drug Administration (FDA) in June to discuss Down Syndrome-associated Alzheimer's Disease (DS-AD). The EL-PFDD meeting will give the FDA and other key stakeholders the opportunity to hear directly from patients, their families, caregivers, and patient advocates specifically about the symptoms of DS-AD, the impacts on daily lives, patient experiences with current available treatments, and hopes for future therapies.

Join Our Webinar. Voices From the Down Syndrome Community with James E. Valentine, Director, and Sarah L. Wicks, Associate, from Hyman, Phelps & McNamara, P.C. April 6, 2026. 3:00 PM ET. Headshots of Sarah and James. NDSS logo.

Information Webinar

Join us for a FREE community webinar to learn about the upcoming EL-PFDD meeting on DS-AD on Monday, April 6, 2026, at 3 PM ET. This session will provide an overview of the EL-PFDD meeting goals, explain how patient and caregiver experiences help inform drug development and regulatory decision-making, and share ways you can participate and make your voice heard.

Register