We’re growing! The TUBB3 Foundation is looking for new board members who care deeply about our mission. We have key openings for Treasurer and Secretary, but we encourage anyone with a heart for service to apply. Your voice can help shape the future.
*Note – due to legalities, board members must reside in the United States.*
To learn more about what a board member position entails and to apply, click the link below.
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!
Join our family Facebook group for support and information from other families affected by TUBB3 variants. It is a great place to share stories, learn from the experience of others, get advice, and connect with others who are going through a similar situation. You can also follow our public pages on Facebook and Instagram for information and updates, and see events and slideshows on our YouTube channel.
Come join other families and individuals with TUBB3 variants to connect and ask questions. Our next TUBB3 Family Connect will be October 15th, at 7:00 PM Central Time. We hope you can join us!
Download the social media profile frame to share and spread awareness for Rare Disease Day on February 28th.
Click here to download the TUBB3 Rare Disease Day Profile Picture Frame
You can also purchase a TUBB3 Rare Disease Day T-Shirt here.
Did you know that TUBB3 has it’s own awareness day celebrated on March 16th? Click below to find out how to get involved and spread awareness of TUBB3 Variants!
Each summer, the TUBB3 Foundation holds a conference for those affected by TUBB3-related conditions. The conference is dedicated to fostering connection, sharing knowledge, and empowering families and individuals. We invite you to join us as we come together to share experiences and learn from experts in the field.
Details for the 2027 conference:
We appreciate all you do to help support the TUBB3 community!
Are you or a family member diagnosed with a TUBB3 variant? You can help spread awareness and bring understanding to others by sharing your story.
We would love to feature you next!
Your donations make this foundation possible! Contributions also go towards family support and connections, including our annual TUBB3 conferences. We appreciate you!
We have apparel! A portion of proceeds come back to us to support you and the foundation.
