The TAR community may be small but together we have a amazing community of support. It has been our mission to raise awareness and increase knowledge to better service our families. We are glad you found us and welcome you to the Uniquely Me Family.
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What is TAR Syndrome?
Thrombocytopenia Absent Radius (TAR Syndrome) is a rare genetic condition affecting roughly 1:200,000 births. It is characterized by very low levels of platelets (which help your blood clot) and missing the radial bone, in each forearm, however the thumbs are not missing as they are in other similar syndromes. There are many different variations of how people can be affected by TAR Syndrome. Missing additional arm bones and different lower limb differences, such as missing knee joints are common, as are heart and kidney problems, bowed legs, and dairy allergies.
The greatest mortality risk for a person with TAR is during the first two years of life. Because platelets and sometimes red blood cell levels are unpredictable and low, the risk of hemorrhage from an injury is much higher. Frequent transfusions are common to keep platelets in a safe range, particularly while kids are young. Typically, platelet numbers improve and stabilize beginning around age two which reduces the need for frequent transfusions, however every person is different and the ranges vary wildly.
Rare disorders are financially challenging. Because it is rare, there is not enough research devoted to the syndrome, which means limited knowledge and resources. Families often travel far distances to see specialists, to receive therapies and devices. Often treatments take you away from home for weeks or months at a time.
The most important thing to know is that kids and adults with TAR are strong, they are determined, and they have the same potential as anyone else. They are artists, teachers, writers, nurses, professionals, dancers, and athletes. Challenges are overcome every day. These families are strong, creative, adaptive, and unique!