Our Mission
We help provide a greater quality of life for individuals and families that navigate the unique challenges of TAR Syndrome and other rare genetic limb differences. We accomplish this goal by raising awareness via community engagement, provide insightful information about rare genetic disorders, create programs that enable access to tools and services, connect individuals with local or online accessible arts, education, and recreational programs, and fund critical lifesaving research and medical assistance to ensure everyone has a chance to reach their goals.
What is TAR Syndrome?
TAR (Thrombocytopenia Absent Radius) Syndrome is characterized by the absence of a bone called the radius in each forearm and a deficiency of blood cells involved in the blood-clotting process. It is a rare genetic disorder that occurs in less than 1 in 100,000 live births. The first year is often the hardest due to internal bleeding which contributes to a mortality rate of about 30-40%. In some cases, serious hemorrhaging episodes may lead to an intellectual disability. After the first two years most individuals go on to have a normal life expectancy.
