Every year we celebrate TUBB3 Variant Awareness Day on March 16th. This date (3-16) was chosen because of Tubulin-beta III (3) which is located on the 16th chromosome (16).
TUBB3 Variant Awareness Day is all about spreading more knowledge and information to create more awareness of TUBB3 related disorders both in the medical field and in our communities. TUBB3 variants are an Ultra Rare Disorder, there is currently very little information known, and we hope in the future to change that and create more knowledge and awareness for all individuals and families affected by TUBB3 variants! Every year on March 16th, there are TUBB3 variant families all over the world who are sharing their stories and raising awareness of this ultra-rare disorder.
You can be a part of spreading awareness! Each time you share information about TUBB3 variants and how they affect individuals and families, you are making a difference! Together, we can bring this ultra-rare syndrome out of darkness and bring hope to those who may be dealing with it alone. Here are some ways you can help:
Donate to the TUBB3 Foundation.
Every year, we make a video that features individuals with a TUBB3 variant. You can help by sending us a photo of your TUBB3 individual. Then, on March 16th, share our video with all your friends and family!
Awareness Day Video 2025
Awareness Day Video 2023
