Kaylee and Jake Massey's daughter Poppy died in April from TBCD complications, a rare genetic… Read more
The TBCD Foundation - Community and Treatment for TBCD Genetic Disorder
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.
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're stronger together. If your child has TBCD, please register your family to receive important updates.
The mother of a toddler with an incredibly rare disorder is set to meet Prince Harry after being… Read more
In her lab, Allison Bradbury, PhD, assistant professor of Pediatrics at The Ohio State University… Read more
A Central Florida family is searching for a cure after their baby was diagnosed with a condition so… Read more
