Sanford CoRDS connects researchers and patients and notifies participants of emerging clinical trials. Enroll in CoRDS today to share your health story with researchers, clinicians, and the TUBB3 Foundation and get information about research that’s relevant to you! Search TUBB3 in the diagnosis box after you register an account for the TUBB3 questionnaire to come up. Remember to check the box to allow the TUBB3 Foundation access to the information!
The Colorado State University Developmental Disabilities Research Lab is investigating neurodevelopmental outcomes associated with tubulinopathy conditions in a project called “Project You-TUB: Tubulinopathy and You!” They are focusing on the development of social and communication skills, motor skills, and activities of daily living in people with Tubulinopathy. See link below for more info. To participate in the research study, please fill out this survey: Welcome to Project You-TUB: Tubulinopathy and You!
The mission of the Tubulin Biobank is to provide information on disorders related to tubulin gene mutations, collect cellular samples for research, and highlight funding and research in the tubulinopathies.
The Engle Lab is a molecular genetics and developmental neuroscience research lab at Boston Children’s Hospital, affiliated with Harvard Medical School. Their mission is to define human congenital disorders of eye and face movement. The Engle Lab is actively enrolling participants for genetic research into TUBB3 and other conditions (see link).
The University of Washington Hindbrain Malformation Research Program studies the biology of hindbrain malformations and neurodevelopmental disorders to understand brain development and improve the lives of families affected by these conditions. They study a variety of conditions including TUBB3 variants with hindbrain malformations and are actively enrolling participants for genetic research (see link).
MedlinePlus is an online health information resource produced by the National Library of Medicine and includes information related to the TUBB3 gene.
National Organization for Rare Disorders is the leading independent patient advocacy organization representing all individuals and families affected by rare diseases in the U.S. NORD improves care, advances research, and drives policy for those living with rare diseases.
Global Genes is committed to providing information, resources, and connections to all communities affected by rare diseases.
