Events

Join us for an inspiring evening of music and community as we unite to support the MED13L Foundation
in its mission to advance research for rare pediatric neurodevelopmental disorders, with a special focus on
MED13L Syndrome.

Join our Midwest MED13L families at Component Brewery on Saturday, March 8th from 12 PM - 3 PM, for a special gathering where community and awareness come together. Experience the exclusive release of “Zebra Hop,” a collaborative beer created to unite The MED13L Foundation families and support rare disease awareness. This unique brew represents the advances in medicine and the continuous pursuit of finding cures for rare diseases, using cutting-edge brewing products and techniques to symbolize innovation and hope.

The event celebrates the collaborative spirit of the brewing industry and the shared commitment to raise awareness for the one in ten individuals living with a rare disease. Come be part of this inspiring experience, connect with other families, and enjoy a drink that toasts to progress and unity in the rare disease community. We look forward to seeing you there!

MED13L Family & Research Meet-up; We are excited to announce our upcoming MED13L Family and Research Meet-up in Boston from July 10th - 12th! This event will bring together patients, families, researchers, and healthcare professionals to share the latest developments, research, and support within our community.