The Phelan-McDermid Podcast: Sharing Research, Progress, and Hope

Giving Families a Voice: Building Meaningful Industry Relationships

August 6, 2026·26 min
Episode Description from the Publisher

What do PMSF's relationships with pharmaceutical companies and other industry companies really mean for families?In this episode, Dr. Lauren Schmitt, Chief Science Officer, and Amanda Bergen, Director of Communications, take you behind the scenes to discuss how PMSF builds meaningful relationships with industry while keeping the voices of individuals with Phelan-McDermid syndrome and their families at the center.They explore how family feedback helps shape clinical trial design, educational resources, and research priorities, while also explaining what PMSF's role is AND what it is not. You'll also hear how these relationships can support PMSF's mission, why transparency matters, and how your participation in the registry, surveys, and community conversations helps move research forward.Whether you're new to the Phelan-McDermid syndrome community or have been following research for years, this episode offers an inside look at how collaboration can help advance better treatments while staying true to PMSF's mission of CONNECT, CARE, and CURE.Learn more about ongoing clinical trials at clinicaltrials.gov or on our webpage at www.pmsf.org/clinical-trials.

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