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

Stephanie Khio

Stephanie Khio is the Manager of Strategic Communication at the MED13L Foundation, translating scientific research into clear, compelling stories that drive awareness, advocacy, and funding. She brings over 12 years of experience in editorial operations and marketing communications across scholarly publications and healthcare organizations.

Her work has included collaborations with Women As One, the Radiological Society of North America, and the American Orthopaedic Society for Sports Medicine. She has also partnered with indigenous communities in Ecuador and Guatemala to translate traditional herbalism into accessible educational materials.

Stephanie is passionate about amplifying underrepresented voices and ensuring families in need of advocacy are heard. Alongside researchers, scientists, and funders, she focuses on the creative side of foundation work including social media, outreach, and photography, ensuring each family's story sparks connection.

Guest appearance on:

MED13L Research Update: Where We Are and Where We’re Headed.