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The TBCD Foundation - Community and Treatment for TBCD Genetic Disorder

  • New Diagnosis?
    You have a community.
    We're here for you.
  • For Healthcare
    Professionals
    TBCD Disorder is extremely rare.
    Learn what you need to know to support your patients.
  • A Hopeful Future
    For Every Child
    We're working together to find the cure

Be a TBCD Hero!

TBCD Disorder research is critically underfunded. We need your help to save our kids.

We're finding more families all the time

You're not alone!

TBCD is rare, but more and more families are joining our small but mighty community. As access to full exome testing becomes more widespread, new cases are being discovered -- as well as new understanding of how TBCD behaves as a disorder along genetic variations.

We encourage you to get involved in the community. TBCD disorder can be a tough path, but you do not have to walk it alone.

Every family we find adds valuable information to our understanding of TBCD genetic disorder, and makes our community stronger.

The TBCD Foundation - we're all in this together.
We're not giving up until TBCD is cured. Our mission is to make sure no kid dies of TBCD Disorder ever again. 

We're not giving up until TBCD is cured. Our mission is to make sure no kid dies of TBCD Disorder ever again. 

We need patient data to pursue a cure, and with such a rare condition every patient's history is crucial. Please register your child with our natural history study to make this possible.

We need patient data to pursue a cure, and with such a rare condition every patient's history is crucial. Please register your child with our natural history study to make this possible.

We're stronger together. If your child has TBCD, please register your family to receive important updates.

We're stronger together. If your child has TBCD, please register your family to receive important updates.

TBCD In The News

TBCD Talk

Meet Our Kids

These are the amazing children that we're fighting to save.

You can visit their independent websites and follow their stories below. 

Want your child added? Please contact us!