#MED13L #MED13LSyndrome

You could be unlocking extra funds for rare disease research just by donating. Ask your HR department today and use the QR Code (or this link: med13l.org/donate/) to get started!

#CorporateMatching #MED13L #RAREDISEASERESEARCH #careaboutrare #med13lsyndrome #RareDisease

They can’t talk…yet.
They can’t run or jump…yet.
We don’t have a cure…yet.

Time is on our side when we make every story count. Thank you to all families, caregivers, researchers, and doctors for contributing to every survey, donation, and research milestone.💙

#MED13L #MED13LSyndrome #RareDisease

🦓 Meet our latest feature of Sibs & Stripes: Madelyn.

Madelyn’s brother, Owen, has #MED13LSyndrome, and we love to witness their sweet bond.

Have a family member you would like to spotlight for Sibs & Stripes? Message us or leave a comment to get featured!

#SibsAndStripes #MED13L #RareDisease

Join us for the 2025 #MED13L Research & Family Meetup in Boston! Book your room by June 10th to receive a discounted rate— and remember: admission is FREE for children aged 10 and under!

Visit med13l.org to register today

#RareDiseaseResearch #RareDisease #MED13LSyndrome #CareAboutRare

📅 We are thrilled to announce the upcoming NORD Rare Disease Scientific Symposium. Join us June 2-3, 2025 in Washington, DC and hear from researchers, clinicians, and industry leaders in #raredisease research.

Register today or learn more at nordscience.org

#MED13L #MED13LSyndrome #CareAboutRare