Posted by: Vanessa Dias
A recent article in Brain & Life highlights the powerful role of families in rare disease advocacy—including the efforts of MED13L Syndrome parents.
The piece showcases how grassroots advocacy drives research and awareness for rare neurodevelopmental disorders. While the article covers multiple conditions, it underscores a critical truth: families are the catalyst for progress. At the MED13L Foundation, we see this daily as our community pushes forward with initiatives like our Natural History Study at Boston Children’s Hospital.
Every story shared, every dollar raised, and every scientific collaboration secured brings us closer to answers for MED13L Syndrome. Read the full article here—and join us in turning our stories into science. Make every story count!
Vanessa Dias
Vanessa is the Co-Director of CURE MED13L Initiative and has 20+ years of experience as a registered nurse, specializing in critical care and clinical coordination. Her youngest child, Elle, was diagnosed with MED13L at 14 months.
