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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 variants 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.