What is it?

Glut 1 DS is rare, genetic disorder that prevents enough glucose (sugar) from getting to the brain, leaving the brain starving for energy. Other names for Glut1 DS are glucose transporter type 1 deficiency syndrome and De Vivo Disease.

What causes it?

People with Glut 1 DS have a mutation in a gene that controls the Glut1 transporter, which is the “vehicle” in the body that moves sugar into the brain. The genetic mutation causes the Glut 1 transporter to work improperly.

What are some of the common symptoms?

  • Seizures
  • Delay in speaking
  • Movement disorders
  • Learning difficulties

How many people have it?

Between 3,000 and 7,000 people in the U.S. have Glut1 DS.

*These organizations are an incomplete listing of rare disease support organizations and are not controlled by, endorsed by, or affiliated with Ultragenyx Pharmaceutical Inc. The list is meant for informational purposes only and is not intended to replace your healthcare professional’s medical advice. Ask your doctor or nurse any questions you may have about your disease or treatment plan. If you would like to have your group added to the list, please contact patientadvocacy@ultragenyx.com.