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About TUBB3

For the most up to date information on TUBB3 please click here.

TUBB3-related tubulinopathy is ultra rare and has no cure, treatment, or standard of care at this time. Patients are commonly misdiagnosed or undiagnosed for years because TUBB3 syndromes are so rare. Individuals with TUBB3 mutations often have to see a team of specialists to treat individual symptoms. These specialists rarely communicate with each other and because there is no standard of care, patients often scramble for years to find effective treatment to help with symptoms. Common symptoms of TUBB3 mutations include but are not limited to:

  • developmental delays
  • limited gross and/or fine motor skills
  • low muscle tone and weakness
  • poor balance
  • eye movement disorders, including CFEOM
  • intellectual disability
  • Cyclic Vomiting Syndrome
  • seizures or epilepsy
  • numbness in limbs
  • Malformations of Cortical Development
  • facial weakness
  • hearing loss
  • skeletal or other abnormalities
  • mirror movements
  • tics or involuntary movements
  • autism

Faces of TUBB3

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Michael1
Liam1
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Baby in hospital with TUBBB3
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Ben3
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Ethan4
Evelyn2
Oliver
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Tommy
Victoria
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Andrea1
girl with TUBB3
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