The Voices of MED13L

"The Voices of MED13L" is a podcast dedicated to raising awareness, sharing stories, and building community around MED13L syndrome—a rare genetic disorder that affects development and communication. Each episode highlights the voices of families, experts, and advocates working to understand and navigate life with MED13L. From personal journeys and medical insights to educational tools and research updates, the podcast offers hope, support, and connection for anyone impacted by this rare condition. Whether you're a parent, professional, or simply curious, "The Voices of MED13L" is a space to listen, learn, and stand together in the face of the unknown.

Visit us at www.med13l.org

X: @med13l_fdn

Guest

Abigail Svedeen, MS CGC

Abigail Sveden, MS, CGC is a certified genetic counselor at Boston Children's Hospital and a member of the Rosamund Stone Zander Translational Neuroscience Center (TNC). She specializes in rare neurodevelopmental disorders and plays a central role in advancing translational research aimed at improving outcomes for affected individuals and families.

Abigail is deeply involved in the MIND Study (MED13L Syndrome Investigation of Natural History and Development), where she helps design, coordinate, and implement natural history research. Her work focuses on building clinical trial readiness through longitudinal data collection, standardized neurobehavioral assessments, and close collaboration with patient communities.

As both a research leader and a compassionate partner to families, Abigail serves as a consistent point of contact for participants — helping guide them through study visits, data collection, and ongoing engagement.

https://www.childrenshospital.org/providers/abigail-sveden

Guest appearance on:

Why the MIND Study Matters: Building Clinical Trial Readiness for MED13L with Abigail Svedeen, MS, CGC