1. TAR Syndrome, Alex`s Website A personal page about this disorder including links to information.Category Health Conditions and Diseases......Updated 200303-14. The Reason for this web page is to help anyone confrontedwith TAR's Syndrome and at the same time find support for my own son. http://personal.nbnet.nb.ca/seepat/

Updated The Reason for this web page is to help anyone confronted with TAR's Syndrome and at the same time find support for my own son. Radial Aplasia-Amegakaryocytic Thrombocytopenia Radial Aplasia-Thrombocytopenia Syndrome Thrombocytopenia-Absent Radii Syndrome TAR Syndrome TAR Syndrom On September 28, 1998 my son Alex was born with thrombocytopenia (low platelet count) and missing radii in both arms. The diagnosis was made as TAR Syndrome, meaning "Thrombocytopenia, Absence of Radius syndrome". The main characteristics of TAR Syndrome are low platelet values, the absence of radii bones (arm) and other skeletal abnormalities. Other clinical features are cardiac abnormalities and cow's milk allergies or intolerance. These children also tend to have elevated white blood cells. Tar Syndrome is a rare genetic disease, when Alex was diagnosed the hospital told us that there was 161 known documented cases in Canada. A Spanish study showed that the estimated frequency of Tar syndrome in their area was .42 per 100,000 live born infants. It is not known if we can assume a similar frequency in Canada and in the United States. Alex's Life History:: Links:: Medical Research / Associations Platelets Pictures of Alex:: (Please be patient, loading may take time)

2. Pediatric Database A definition of tar syndrome, the epidemiology, pathogenesis, clinical features, investigations and management. http://www.icondata.com/health/pedbase/files/TARSYNDR.HTM

Pediatric Database (PEDBASE) Discipline: GEN Last Updated: 4/13/94 TAR SYNDROME DEFINITION: Thrombocytopenia-Absent Radii (TAR) Syndrome is characterized by the neonatal onset of thrombocytopenia and bilateral absence or hypoplasia of the radii with normal thumbs. EPIDEMIOLOGY: incidence: rare age of onset: thrombocytopenia within first 4 months of life risk factors: familial - autosomal recessive chrom.#: ? gene: ? PATHOGENESIS: one of at least 3 autosomal recessive syndromes associated with hematopoietic and skeletal anomalies: AASE Syndrome Fanconi Anemia one of at least 4 disorders associated with radial agenesis: Baller-Gerold Syndrome Fanconi Anemia Holt-Oram Syndrome VATER Association CLINICAL FEATURES: 1. Thrombocytopenia onset in newborn period but tends to improve with age episodes precipitated by stress, infections, surgery, and cow's milk allergy bloody stool hematemesis hemorrhage intracranial bleeds nosebleeds purpura 2. Musculoskeletal Manifestations short stature radii - bilateral hypoplasia or aplasia with normal thumbs ulnae - hypoplasia or aplasia defects of hands, legs, and/or feet

3. TAR Syndrome Support Group For families of children born with this rare disorder.Category Health Conditions and Diseases......Welcome to tar syndrome Support Group. Click here to enter! Click here to enter! 1999 2002 tar syndrome Support Group, UK. All rights reserved. http://www.ivh.se/TAR/

Welcome to TAR Syndrome Support Group Click here to enter! A support group for families of children born with this rare disorder. The support group is affiliated to 'Contact a Family' in UK. The content provided on, or linked to, this Web site is for general information purposes only and is not intended to substitute a personal consultation with medical professionals. Site visitors are urged to contact a doctor for specific information regarding their personal health condition, diagnosis and medical treatment. © 1999 - 2002 TAR Syndrome Support Group, UK. All rights reserved. Webmaster erik.wennstrom@ivh.se [Last modified: 19 October 2002]

4. TAR Syndrome tar syndrome. Thrombocytopenia Absent Radius Syndrome Association. 212 Sherwood Dr, RD1 http://www.kumc.edu/gec/support/tarsynd.html

TAR syndrome Thrombocytopenia Absent Radius Syndrome Association 212 Sherwood Dr, RD1 Linwood, NJ 08221-9745 e-mail: tarsa@aol.com Also See: National organizations with information on genetic conditions or birth defects - variety of resources National Organization for Rare Disorders Thrombocytopenia Absent Radius Syndrome Disease Information OMIM, Online Mendelian Inheritance in Man TAR syndrome To locate a genetic counselor or clinical geneticist in your area: Professional Genetics Societies Genetic clinics, centers, departments Genetic Societies Clinical Resources ... Search Genetics Education Center Debra Collins, M.S. CGC , Genetic Counselor, dcollins@kumc.edu This site subscribes to the principles of the HONcode (Health on the Net, Code of Conduct for Medical and Health Web Sites) of the Health On the Net Foundation

5. The Contact A Family Directory - TAR SYNDROME printer friendly. tar syndrome. home. more about us http://www.cafamily.org.uk/Direct/t12.html

printer friendly TAR SYNDROME home more about us in your area conditions information ... how you can help search this site TAR: Thrombocytopenia and Absent Radius Thrombocytopenia means low platelets. The thrombocytes are the platelets and "penia" means "not very much of." In T hrombocytopenia and A bsent R adius there are low platelets and absence of the radius on both sides (bilaterally). The radius and the ulna are the two bones in the forearm. The radius is the bone that is on the side of the forearm where the thumb is and the ulna is on the side of the arm where the little finger is. There may be other bones involved as well but the unique feature of Thrombocytopenia and Absent Radius is that although the radius is absent, the thumb is present. Most other limb anomalies that involve the radius also affect the thumb. There are a number of other disorders that involve elements of the blood and abnormal structure of bones of the arm and it is important to realise that TAR is a very specific condition. TAR is considered a congenital abnormality since the bone structure is abnormal at birth. TAR has an ongoing problem since during childhood most affected individuals continue to have low platelets. Viral illnesses and other kinds of stress can cause the platelets to become very low and even require platelet transfusions. All individuals with TAR have low platelets but often as they grow older, it becomes less of a problem and affected individuals can outgrow the risk of bleeding related to low platelets. About ninety per cent of individuals with TAR are symptomatic during the first year of life with easy bruising, bleeding from the GI tract or even bleeding into the brain. The level of platelets will fall and rise throughout low platelet episodes. A normal platelet count is greater than two hundred thousand platelets per millilitres squared of blood. Individuals with TAR may have less than ten thousand platelets per millilitres squared when they are having severe episodes.

6. TAR Syndrome Support Group For families of children born with this rare disorder. http://www.ivh.se/TAR/index.html

Welcome to TAR Syndrome Support Group Click here to enter! A support group for families of children born with this rare disorder. The support group is affiliated to 'Contact a Family' in UK. The content provided on, or linked to, this Web site is for general information purposes only and is not intended to substitute a personal consultation with medical professionals. Site visitors are urged to contact a doctor for specific information regarding their personal health condition, diagnosis and medical treatment. © 1999 - 2002 TAR Syndrome Support Group, UK. All rights reserved. Webmaster erik.wennstrom@ivh.se [Last modified: 19 October 2002]

7. TAR Syndrome tar syndrome is inherited as an autosomal recessive trait. tar syndromeis also known as Radial Aplasia-Amegakaryocytic Thrombocytopenia. http://personal.nbnet.nb.ca/seepat/brief.htm

Brief Summary: Thrombocytopenia-absent radius (TAR) syndrome is a rare genetic disorder that is apparent at birth (congenital). The disorder is characterized by low levels of platelets in the blood (thrombocytopenia), resulting in potentially severe bleeding episodes (hemorrhaging) primarily during infancy. Other characteristic findings include absence (aplasia) of the bone on the thumb side of the forearms (radii) and underdevelopment (hypoplasia) or absence of the bone on the "pinky" side of the forearms (ulnae). Other abnormalities may also be present, such as structural malformations of the heart (congenital heart defects), kidney (renal) defects, and/or mental retardation that may be secondary to bleeding episodes in the skull (intracranial hemorrhages) during infancy. TAR syndrome is inherited as an autosomal recessive trait. Tar Syndrome is also known as: - Radial Aplasia-Amegakaryocytic Thrombocytopenia - Radial Aplasia-Thrombocytopenia Syndrome - Thrombocytopenia-Absent Radii Syndrome Management of Disorder: Supportive : 1. Supportive transfusions of platelets, whole blood products

8. The Contact A Family Directory - Index T tar syndrome TB see Tuberculosis TPMT see Purine Pyrimidine Metabolic DiseasesTSC see Tuberous Sclerosis Talipes see Lower Limb Abnormalities Tauri Disease http://www.cafamily.org.uk/Idx/t.html

printer friendly home more about us in your area ... how you can help search this site Please use the Index below to access the condition on which you require information. If you do not find what you want in the Index then try our search facility in the navigator on the left. Contact a Family also has information on many other specific conditions and rare disorders. If you cannot find the information you require in The Contact a Family Directory Online , you may wish to use our Contact a Family Helpline service. TAR Syndrome TB see Tuberculosis TPMT see TSC see Tuberous Sclerosis Talipes see Lower Limb Abnormalities Tangier Disease see Metabolic Diseases Tauri Disease see Glycogen Storage Diseases TaySachs Disease T-cell Activation Deficiency see Primary Immunodeficiencies T-cell Receptor Deficiency see Primary Immunodeficiencies Telangiectasia see Vascular Birthmarks Termination of Pregnancy see Fetal Abnormality Testicular Feminisation see Androgen Insensitivity Syndrome Tetrahydrobiopterin Deficiency see Metabolic Diseases Tetralogy of Fallot see Heart Defects Tetraplegia see Spinal Injuries Thalassaemia Major (Beta-thalassaemia) Thiopurine methyltransferase deficiency/superactivity see Thomsen Disease see Muscular Dystrophy and neuromuscular disorders Thrombocytopenia with Absent Radii see TAR Syndrome Thymic Aplasia see Primary Immunodeficiencies Thymoma with Hypogammaglobulinaemia see Primary Immunodeficiencies Thyroid Associated Ophthalmopathy see Thyroid Eye Disease Thyroid Disorders Thyroid Eye Disease Thyroid Ophthalmopathy see

9. TAR Syndrome syndrome was first noted by Greenwald and Sherman in 1929 5 . However, certain definitionof tar syndrome and using “TAR” acronym was done by Hall et al. http://ams.cu.edu.tr/July2000Vol9No2/tar.htm

Two New Cases of Thrombocytopenia-Absent Radii (TAR) Syndrome* Ercan Kýrými, MD, Nejat Narlý, MD, Mehmet Satar, MD. Thrombocytopenia-absent radii syndrome is characterized by the neonatal onset thrombocytopenia and bilateral absence or hypoplasia of the radii with normal or poorly formed hands and thumbs. In this paper, two unrelated female infants affected by thrombocytopenia-absent radii syndrome are described. At birth, bilateral micromelia of upper limbs, short and radially curved forearms and hypoplastic arms were observed in infants. A severe thrombocytopenia confirmed the clinical diagnosis of thrombocytopenia-absent radii syndrome. One of them died on 19 th day at home with hemorrhagic complications because she was discharged by her family. Other patient supported with thrombocyte suspensions is now eight months old and is still being followed closely at our outpatient department. As a result, two patients with thrombocytopenia-absent radii syndrome which are seen rarely discussed with physical, laboratory and follow specifications. Ann Med Sci 2000;9:78-81 Key words: Thrombocytopenia-absent radii syndrome.

10. TAR Syndrome THROMBOCYTOPENIA AND ABSENT RADIUS (TAR) SYNDROME. 18th January 2000.© 19992000 tar syndrome Support Group, UK. All rights reserved. http://www.angelfire.com/ma3/jaredmills/jared_r._mills_003.htm

THROMBOCYTOPENIA AND ABSENT RADIUS (TAR) SYNDROME Thrombocytopenia and Absent Radius is certainly a big mouthful but in fact it is simply a descriptive term. Thrombocytopenia means low platelets. The thrombocytes are the platelets and "penia" means "not very much of." There are two bones in the forearm: The radius and the ulna. The radius is the bone that is on the side of the forearm where the thumb is and the ulna is on the side of the arm where the little finger is. In Thrombocytopenia and Absent Radius there are low platelets and absence of the radius on both sides (bilaterally). There may be other bones involved as well but the unique feature of Thrombocytopenia and Absent Radius is that although the radius is absent, the thumb is present. Most other limb anomalies that involve the radius also affect the thumb. There are a number of other disorders that involve elements of the blood and abnormal structure of bones of the arm and it is important to realize that TAR is a very specific condition. The features of each particular syndrome have been fairly well defined although there are always new things that are learned (perhaps even your family can contribute to new knowledge). TAR is considered a congenital abnormality since the bone structure is abnormal at birth (congenital means present at birth). But TAR also has an ongoing problem since during childhood most affected individuals continue to have low platelets. In fact, with viral illnesses and other kinds of stress, the platelets may become very low and even require platelet transfusions.

11. Jared R Mills Home Page Jared was born on February 19, 2001 with tar syndrome. We startedthis web site as a way to share information about tar syndrome http://www.angelfire.com/ma3/jaredmills/jared_r._mills_002.htm

Jared was born on February 19, 2001 with TAR Syndrome. We started this web site as a way to share information about TAR Syndrome and to brag about out little cutie View Our Guestbook Sign Our Guestbook What is TAR Syndrome? You can contact us via Email @ jsmills7476@msn.com Home Click the Home Button to go to the Main Page Updates News and Updates of Jared Story Our stories and other letters Pictures Family Pic's Jared R Mills Fund A fund setup to aid Jared Links Other TAR related sites

12. About T.A.R. Syndrome ABOUT tar syndrome We have updated this page to have multiple articlesavailable to the community. Original About tar syndrome Article. http://www.spencerhawk.com/about.shtml

ABOUT TAR SYNDROME We have updated this page to have multiple articles available to the community. We have everything here from medical dysertations that are more formal, to recent aticles or news stories that may just be plain inspiring. If you have an article you would like to suggest for posting, Let us know about it! Last Updated August 27th, 2001 Original About TAR Syndrome Article. Compiled from medical site off internet by Coburn Hawk. Written in medical terms but rather easy to follow. A few personal notes added by Coburn to ease the mind and soul. Here is a the story featured in the August 2001 Wired article "The Next Brainiacs." An amazing Article by John Hockenberry that talks about the present and future of assistive devices. He compares them to user interfaces (much like this webpage) that allow people to interact with the world (just like you are now accessing information in code from my webserver). "Bodies are an arbitrary evolutionary solution to issues of mobility and communication. the brain has no particular preference for any physical configuration as long as functionality can be preserved"

13. About T.A.R. Syndrome ABOUT tar syndrome The most important thing for parents with children with TARSyndrome to know about the condition is that all environmental aspects been http://www.spencerhawk.com/article1.shtml

ABOUT TAR SYNDROME -The most important thing for parents with children with TAR Syndrome to know about the condition is that all environmental aspects been ruled out as possible causes. It wasn't anything you did, or ate, or didn't do. It is a very rare condition and although they haven't isolated the exact gene yet, it is genetic. Both the father and the mother carry a recessive gene that doesn't show up in either family. Below is all the technical data. Back to the Main About TAR Sydrome Page DEFINITION: What's TAR Syndrome? Technically: Thrombocytopenia-Absent Radii (T.A.R.) Syndrome is characterized by the neonatal onset of thrombocytopenia and bilateral absence or hypoplasia of the radii with normal thumbs. In english, this means a low blood platelate count and the absence of bones in the arms. This is genetic in nature and is exceptionally rare... on the order of 1 in 400,000. Many (but not all) Children with TAR have allergies to cow's milk and dairy products. In addition to cow's milk allergies (the protein in the milk), soy is also an allergen because of the protein. Breast feeding mothers may have to modify their diets, eliminating both dairy and soy. As always, you should consult your doctor on this but remember that due to the rarity of the syndrome, doctors may not be aware of the high probability of these alergies. If they don't know, request that they find out. Don't take risks with your child's health because you are afraid to ask.

14. Thrombocytopenia-Absent Radius (TAR) Syndrome HOME ThrombocytopeniaAbsent Radius (TAR) Syndrome. tar syndrome; TarSyndrome; tar syndrome; THROMBOCYTOPENIAABSENT RADIUS SYNDROME. HOME http://www.bdid.com/tar.htm

HOME Thrombocytopenia-Absent Radius (TAR) Syndrome Thrombocytopenia Absent Radius Syndrome (TAR) Daughter with TAR syndrome, G tube feeds, and Central line feedings and dislocated hips Prenatal diagnosis of an uncommon syndrome: thrombocytopenia absent radius (TAR) TAR SYNDROME ... HOME

15. Eddies TAR Syndrome Page - Glossary Syndrome see also Thrombocytopenia Absent Radius Syndrome tar syndrome Short forThrombocytopenia Absent Radius Syndrome see also Thrombocytopenia Absent http://www.geocities.com/edward_white83/tar/glossary.html

Glossary Cruciate ligaments Ilizarov frame Lower Arm Platelets ... Ulna Cruciate ligaments the two ligaments that cross over the knee diagonally holding the knee straight. Ilizarov frame a metal fromework that is attached to the bones in the leg. these are then adjusted to control the repairing of a break allowing the bone to be rotated or lengthened Ligament ligaments are fibrous straps that stop your joints from moving in certain directions. Double jointedness is caused by extra stretchy ligaments Lower Arm The part of your arm from the wrist to the elbow. Platelets Cell fragments that are produced in bone marrow when you bleed these collect at the cut and stick together to form a clot. Radius The bone that with the Ulna make up the lower arm . The Radius is the longer of the two bones and is missing in TAR TAR Short for Thrombocytopenia Absent Radius Syndrome see also Thrombocytopenia Absent Radius Syndrome TAR Syndrome Short for Thrombocytopenia Absent Radius Syndrome see also Thrombocytopenia Absent Radius Syndrome Thalidomide Drug used in the 50s and 60s to suppress the effects of morning sickness. It caused Birth Defects similar to

16. Eddies TAR Syndrome Page - Home The aim of this site is to use this site to gather what information there is availableon tar syndrome into one place to make it easier to find. Introduction. http://www.geocities.com/edward_white83/tar/home.html

Introduction Hi welcome to my website devoted to the condition Thrombocytopenia Absent Radius Syndrome . The aim of this site is to use this site to gather what information there is available on TAR Syndrome into one place to make it easier to find. When my brother was born there were only a few lines of German in a medical journal, Hopefully the internet and this website can change that. updates Date 00/00/00 The TAR section of gets split off into It's own site (This one) with a lot more information on Tar Syndrome than the original page that was on Site Map Home You are here. The place to find the Introduction, Updates and of course the Site Map. Symptoms The explanation of what Tar syndrome is and what the effects of it are. FAQ The most Frequently Asked Questions and their answers. Glossary all the technical terms that are used throughout this site and their explanation. Links Additional resources that I've found useful. My Story A basic summary of how I've dealt with TAR Syndrome

17. No Fear: Caleb's Story - York Daily Record Local News Health Enviroment No Fear Caleb's Story ABOUT TARSYNDROME TAR FURTHER INFORMATION About tar syndrome. top. http://ydr.com/page/caleb/tarsyndrome/

@import url("/stylesheets/ydr2002extended.css"); Browse About us Announcements Calendar of Events Classifieds ... No Fear: Caleb's Story ABOUT TAR SYNDROME TAR Syndrome (thrombocytopenia absent radius) is a rare genetic disorder, affecting about four people per one million worldwide since it was originally described in medical literature in 1951. The syndrome varies widely in its presentation, ranging from mild to severe structural anomalies and other medical problems. Babies with TAR may have a combination of shortened limbs, heart or kidney problems, mental retardation, a decreased production of platelets and bleeding disorders. While some cases are diagnosed prenatally through specialized blood tests or imaging techniques, most cases are diagnosed at birth. Dr. Charles Peterson, director of the blood diseases program at the National Heart, Lung and Blood Institute in Bethesda, Md., said the number of TAR cases does not include babies who die from the syndrome in utero before they are diagnosed. Although progress has been made toward the prenatal identification of babies with TAR, Peterson said, doctors have been unable to isolate the recessive gene that is the cause. “It’s so rare, you don’t get a lot of families (with TAR) you can study,” he said.

18. TAR Syndrome Support Group Welcome to tar syndrome Support Group. Click here to enter! Click here to enter! 1999 2001 tar syndrome Support Group, UK. All rights reserved. http://w1.864.telia.com/~u86407364/

Welcome to TAR Syndrome Support Group Click here to enter! A support group for families of children born with this rare disorder. The support group is affiliated to 'Contact a Family' in UK. © 1999 - 2001 TAR Syndrome Support Group, UK. All rights reserved. Please send comments and suggestions to webmaster erik.wennstrom@ivh.se This website is hosted and maintained, free of charge to the TAR Syndrome Support Group, by IVH AB, Sweden.

19. No Fear: The Story Of Caleb - York Daily Record NO FEAR THE STORY OF CALEB. Thurs., June 21, 2001. tar syndrome. TARSyndrome (thrombocytopenia absent radius) is a rare genetic disorder http://www.ydr.com/caleb/tar.shtml

Search ydr.com Search the web Browse About us Announcements Awards Books Calendar of Events Classifieds Contact us Friday Magazine Health/Environment Jobs at YDR Mike Argento Newslibrary News Projects Obituaries Pets Photos ProQuest Archive Religion Tuned In YDR Links YDR Store York County History NO FEAR: THE STORY OF CALEB Thurs., June 21, 2001 TAR Syndrome TAR Syndrome (thrombocytopenia absent radius) is a rare genetic disorder, affecting about four people per one million worldwide since it was originally described in medical literature in 1951. The syndrome varies widely in its presentation, ranging from mild to severe structural anomalies and other medical problems. Babies with TAR may have a combination of shortened limbs, heart or kidney problems, mental retardation, a decreased production of platelets and bleeding disorders. While some cases are diagnosed prenatally through specialized blood tests or imaging techniques, most cases are diagnosed at birth. Dr. Charles Peterson, director of the blood diseases program at the National Heart, Lung and Blood Institute in Bethesda, Md., said the number of TAR cases does not include babies who die from the syndrome in utero before they are diagnosed. Although progress has been made toward the prenatal identification of babies with TAR, Peterson said, doctors have been unable to isolate the recessive gene that is the cause. “It’s so rare, you don’t get a lot of families (with TAR) you can study,” he said.

20. Orthopedic Manifestations Of The TAR Syndrome | JACPOC Library, 1987 Link to Figures. Show Figures. Article Text. Figures. References. Send Link. SendHTML Article. Orthopedic Manifestations of the tar syndrome. CHARLES D. BUKREY,MD*. http://jacpoc.oandp.com/library/1987_02_033a.asp

Keyword search: Exact Phrase All Words Any Words Boolean Search oandp.com JACPOC Library 1987 Vol 22, Num 2 Link to Figures Show Figures Article Text Figures References Send Link Send HTML Article Orthopedic Manifestations of the TAR Syndrome CHARLES D. BUKREY, MD* The TAR (thrombocytopenia absent radius) syndrome is a rare genetic disorder that follows an autosomal recessive pattern of inheritance. It is to be distinguished from the Fanconi variants. Several types of limb deficits are associated with this syndrome. The Area Child Amputee Center has been involved in the evaluation and care of six children with this syndrome. Patients tend to have a rather typical bilateral intercalary radial hemimelia. The marked foreshortening in the upper extremities make them the clinical homologues of an upper total phocomelia. They also tend to have lower-limb anomalies, which consist primarily of a marked genu varum. The deformity is accompanied by a variety of roentgenographic manifestations. Upper- and lower-limb problems are addressed as regards clinical presentation and prosthetic/orthotic management. *Area Child Amputee Center, 235 Wealthy SE, Grand Rapids, MI 49503

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