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Thrombocytopenia Absent Radius is a genetic condition that occurs in less than 1:250,000 births. TAR causes low platelets, (which ar what helps your blood to clot), as well as missing both the radial bones. Because of the dangerously low platelet counts the risk of mortality is highest in the first two years of life. Having a knowledgeable hematologist is critical to the care and safety of our kids with TAR to ensure their health is monitored closely and the need for transfusions are monitored. There are several other potential complications associated with TAR, and like many limb differences PT and OT are critical parts of care.
There are two types of limb differences- congenital (born with the limb difference) or acquired by illness or accident. 1 in 4 people in the US have a disability and approximately 2.1 million in the US are living with a limb difference. Over 30 million people worldwide have a difference.
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Volunteer Seamstresses- Many of our children struggle to have something that fits. Our network of volunteers assists with making a special item fit to your child.
Are you a OT, PT or a Speech Pathologist interested in sharing your knowledge through our community links.
Often diagnosed while pregnant or soon after birth, families can struggle finding connections and information. A rare diagnosis can be frightening. You can help provide a foundation for hope by supporting our mission to provide information, resources and to light a pathway for supporting new families. These critical resources are a powerful way to advocate for inclusion.
Being different is a strength. It is the potential for learning something new about ourselves and others around us. However there is often a lack of education and awareness surrounding limb differences. The lack of education and awareness creates barriers and stigma because it is unknown. UMF is working to change that for all our families. We have donated over 500 books to schools, libraries and hospitals and that number is growing. We have provided awareness chats and learning opportunities to support professionals in therapy and medical spaces. Together we can make it happen.
Have a question or want to get in touch? We'd love to hear from you. Contact us today and we'll get back to you as soon as possible.
email: infor@uniquely-me.org