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

Co-host

Vanessa Dias

Here’s the shortened version:

Vanessa lives in New York with her husband and three children. After her youngest was diagnosed with MED13L syndrome in 2019, she became dedicated to advocacy and research. She joined The MED13L Foundation Board in 2021 and serves as Vice Chair. Vanessa is also the co-founder, Chair, and CEO of Able Athletics, an inclusive sports nonprofit. At The MED13L Foundation, she helped establish the Scientific Advisory Board, secured an ICD-10 code, and supported drug discovery. She also leads marketing, communications, and operations.