1. VHL Family Alliance Homepage Dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected by von hippellindau disease. VHL Awareness Month. http://www.vhl.org/

Dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected by Von Hipp e l-Lindau disease VHL Awareness Month Donate safely online Update on Clinical Trials March issue now online ... VHL Links Language s: auf deutsch dansk Belgie Canada ... European Countries

2. NINDS Von Hippel-Lindau Disease Information Page More about von hippellindau disease (VHL), Studies with patients, NINDS von hippel-lindau disease Information Page Synonym(s) Angiomatosis Reviewed 05-09-2002 http://www.ninds.nih.gov/health_and_medical/disorders/vonhippe_doc.htm

National Institute of Neurological Disorders and Stroke Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system Browse all disorders Browse all health organizations More about von Hippel-Lindau disease (VHL) Studies with patients Research literature Press releases Search NINDS... (help) Contact us My privacy NINDS is part of the National Institutes of Health NINDS von Hippel-Lindau Disease Information Page Synonym(s): Angiomatosis Reviewed 05-09-2002 Get Web page suited for printing Email this to a friend or colleague Table of Contents (click to jump to sections) What is von Hippel-Lindau disease (VHL)? Is there any treatment? What is the prognosis? What research is being done? ... Organizations What is von Hippel-Lindau disease (VHL)? Is there any treatment? Treatment for VHL varies according to the location and size of the tumor and its associated cyst. In general, the objective of treatment is to treat the growths when they are causing symptoms but while they are still small so that they do not cause permanent problems by putting pressure on the brain or spine, blocking the flow of cerebrospinal fluid in the nervous system, or impairing vision. Treatment of most cases of VHL usually involves surgery to remove the tumors before they become harmful. Certain tumors can be treated with focused high-dose irradiation. Individuals with VHL need careful monitoring by a physician and/or medical team familiar with the disorder.

3. Ocular Manifestations Of Von Hippel-Lindau (VHL) Disease An article by Emily Chew, M.D., National Eye Institute. http://www.vhl.org/meetings/97c3chew.htm

Basic Facts About VHL Managing Your Health Information for Health Care Professionals Research ... Press Room Families, Friends, Physicians, Researchers working together to improve diagnosis, treatment, quality of life for people affected by von Hippel-Lindau disease. Ocular Manifestations of von Hippel-Lindau (VHL) Disease by Emily Chew, M.D. National Eye Institute National Institutes of Health From a talk presented at the VHLFA Patient/Provider Conference, May 1997, Bethesda, Maryland Often patients o not have symptoms as these lesions tend to progress slowly. The tumors can be detected in children to adults in the eighth decade of life on a routine exam(7,9). Symptoms such as decreased vision or a turned-in eye (crossed eye) may results in the detection of VHL in children. Decreased visual acuity can also cause adults to seek medical help and subsequent detection of the disease. The importance of maintaining good visual function in patients affected with VHL depends on regular dilated eye examination (with the pupil of the eye opened with drops). For patients who are at risk of developing VHL, an annual dilated eye exam will provide important information and help maintain good vision. Good vision can be achieved and maintained in many affected individuals, especially if the lesions are detected and treated early in the course of the disease. References 1. Melmon KL, Rosen SW. Lindau's disease: review of the literature and study of a large kindred.

4. EMedicine - Von Hippel-Lindau Disease : Article By Arun Gulani, MD von hippellindau disease - von Hippel disease exhibits the characteristics of congenital capillary angiomatous hamartomas of the retina and the optic Ophthalmology Phakomatoses. von hippel-lindau disease. Last Updated August 6, 2001 hemangioblastomas in the cerebellum ie, von hippel-lindau disease) and other organs of the body http://www.emedicine.com/oph/topic354.htm

(advertisement) Home Specialties Resource Centers CME ... Patient Education Articles Images CME Patient Education Advanced Search Consumer Health Link to this site Back to: eMedicine Specialties Ophthalmology Phakomatoses von Hippel-Lindau Disease Last Updated: April 22, 2004 Rate this Article Email to a Colleague Synonyms and related keywords: von Hippel disease, retinal angiomatosis, capillary hemangiomas of the retina AUTHOR INFORMATION Section 1 of 10 Author Information Introduction Clinical Differentials ... Bibliography Author: Arun Gulani, MD , Assistant Professor, Department of Ophthalmology, Director of Refractive Surgery, Chief, Cornea and External Disease, University of Florida at Jacksonville Arun Gulani, MD, is a member of the following medical societies: American Academy of Ophthalmology Editor(s): Michael J Bartiss, OD, MD , Medical Director, Ophthalmology, Family Eye Care of the Carolinas; Donald S Fong, MD, MPH , Assistant Clinical Professor of Ophthalmology, UCLA School of Medicine; Consulting Physician, Department of Ophthalmology, Southern California Permamente Medical Group; J James Rowsey, MD

5. EMedicine - Von Hippel-Lindau Disease : Article By James P Evans, MD, PhD Genetics And Metabolic Disease. von hippellindau disease. Last Updated July 19, 2002 Background von Hippel-Lindau (VHL) disease is a rare inherited disorder manifested by visceral http://www.emedicine.com/ped/topic2417.htm

(advertisement) Home Specialties CME PDA ... Patient Education Articles Images CME Patient Education Advanced Search Link to this site Back to: eMedicine Specialties Pediatrics Genetics And Metabolic Disease von Hippel-Lindau Disease Last Updated: July 19, 2002 Rate this Article Email to a Colleague Synonyms and related keywords: VHL, von Hippel-Lindau's disease, Hippel disease, Hippel's disease, Hippel-Lindau disease, retinocerebral angiomatosis, Lindau disease, Lindau's disease, von Hippel-Lindau syndrome AUTHOR INFORMATION Section 1 of 9 Author Information Introduction Clinical Differentials ... Bibliography Author: James P Evans, MD, PhD , Director of Cancer Genetics, Associate Professor, Department of Internal Medicine, University of North Carolina at Chapel Hill and University Hospitals Coauthor(s): Cecile Skrzynia, MS, CGC , Genetic Counselor, Clinical Assistant Professor, Department of Internal Medicine, University of North Carolina at Chapel Hill Editor(s): Erawati Bawle, MD, FAAP, FACMG , Director, Division of Genetic and Metabolic Diseases, Children's Hospital of Michigan; Clinical Professor, Department of Pediatrics, Wayne State University School of Medicine;

6. SupportPath.com: Von Hippel-Lindau Disease SupportPath.com leads you to Internet resources for supportrelated information on hundreds of health, personal, and relationship topics. von hippel-lindau disease. VHL is a hereditary disease where angiomas (abnormal nodules) form in the small blood and families affected by von hippel-lindau disease." Date Added 03/25 http://www.supportpath.com/sl_v/von_hippel_lindau_disease.htm

von Hippel-Lindau Disease VHL is a hereditary disease where angiomas (abnormal nodules) form in the small blood vessels (capillaries) of the retina or brain. Angiomas can weaken the capillary walls leading to leakage of blood which can damage surrounding tissues. Fluid-filled cysts and tumors may also be present in the spinal cord, pancreas, kidney or liver. There is no cure for VHL. Also called: VHL, Cerebroretinal angiomatosis, Lindau-von Hippel disease, Retinocerebral angiomatosis Other topics of interest on SupportPath.com: Rare Disorders Visual Impairment About Us Add-A-Link ... here Online Communities / Message Boards... None Listed Online Chats... Note: Regularly scheduled chats are listed on our NEW Online Events Calendar Links in this section are primarily to chat rooms open 24/7 which may or may not be moderated. None Listed Usenet Groups... Note: Your browser must be properly configured to access Usenet groups from this site. None Listed Mailing Lists... None Listed National / International Organizations... UNITED STATES VHL Family Alliance Website: http://www.vhl.org/

7. Von Hippel-Lindau Disease von hippellindau disease. DESCRIPTION One of the neurocutaneous syndromes (phakomatoses Von Hippel-Lindau Syndrome Family Alliance. NINDS von hippel-lindau disease Information Page http://www.5mcc.com/Assets/SUMMARY/TP0990.html

von Hippel-Lindau disease DESCRIPTION: One of the neurocutaneous syndromes (phakomatoses). A familial cancer syndrome with predisposition to ocular and CNS hemangioblastomas, renal cell carcinoma, and pheochromocytomas. Prognosis is variable. CAUSES: Autosomal dominant with gene locus at chromosome region 3p25-3p26 Synonyms: Cerebelloretinal hemangioblastomatosis Angiophakomatosis retinae et cerebelli ICD-9-CM: 759.6 other hamartoses, NEC Web references: Von Hippel-Lindau Syndrome Family Alliance Von Hippel-Lindau Syndrome Family Alliance NINDS von Hippel-Lindau Disease Information Page Author(s): Nuhad D. Dinno, MD

8. The Human Gene Map of the characteristics and the development of von hippellindau disease....... http://www.ncbi.nlm.nih.gov/cgi-bin/SCIENCE96/nph-gene?VHL

9. Introduction Von Hippel-Lindau Disease - WrongDiagnosis.com Introduction von hippellindau disease. von hippel-lindau disease Genetic disease causing multiple benign tumors. Von Hippel-Lindau http://www.wrongdiagnosis.com/v/von_hippel_lindau_disease/intro.htm

10. Inheritance And Genetics Of Von Hippel-Lindau Disease Inheritance and Genetics of von hippellindau disease. About inheritance and genetics Inheritance of von hippel-lindau disease http://www.wrongdiagnosis.com/v/von_hippel_lindau_disease/inherit.htm

11. Mainpage CHOICE For Partners Healthcare Health and wellness services, medical information, and interactive health features for our user community. Diseases, Conditions and Injuries. von hippellindau disease. Pronounced VON HIP-el LIN-do von hippel-lindau disease (VHL) is a rare genetic disorder (affecting approximately 1 in 36 http://community.healthgate.com/GetContent.asp?siteid=partners&docid=/dci/vo

12. Von Hippel-Lindau Disease Print this article. Find related articles By topic Neurology. By keywords Receive HealthLink via email! Subscribe now . von hippellindau disease. http://healthlink.mcw.edu/article/921991275.html

Search Articles: search tips Please Take the HealthLink Survey Email this article Print this article Find related articles: By topic: Neurology By keywords: Receive Health Link via email! Subscribe now >> Von Hippel-Lindau Disease von Hippel-Lindau disease (VHL) is a rare, genetic multi-system disorder characterized by the abnormal growth of blood vessels in certain parts of the body (angiomatosis). The blood vessels "knot" together to form benign (non-cancerous) growths called angiomas. Angiomas may develop in the brain, the retina of the eyes, and other areas of the nervous system. Other types of tumors develop in the adrenal glands, the kidneys, or the pancreas. Symptoms of VHL vary among patients and depend on the size and location of the anigomas. Symptoms may include headaches, problems with balance and walking, dizziness, weakness of the limbs, vision problems, and high blood pressure. Cysts (fluid-filled sacs) and/or tumors (benign or cancerous) may develop around the angiomas and cause the symptoms listed above. Individuals with VHL are also at a higher risk than normal for certain types of cancer, especially kidney cancer. Treatment for VHL varies according to the location and size of the angiomas. In general, the objective of treatment is to treat the growths when they are small so that they do not cause permanent problems by putting pressure on the brain or spine, blocking the flow of cerebrospinal fluid in the nervous system, or impairing vision. Treatment of most cases of VHL usually involves surgery to remove the tumors before they become harmful. Individuals with VHL need careful monitoring by a physician and/or medical team familiar with the disorder.

13. Von Hippel-Lindau Disease - Wikipedia, The Free Encyclopedia von hippellindau disease. From Wikipedia, the free encyclopedia. von hippel-lindau disease (VHL) is a rare inherited genetic condition http://en.wikipedia.org/wiki/Von_Hippel-Lindau_Disease

Von Hippel-Lindau Disease From Wikipedia, the free encyclopedia. Von Hippel-Lindau Disease (VHL) is a rare inherited genetic condition involving the abnormal growth of tumors in parts of the body which are particularly rich in blood supply. In people with VHL little knots of capillaries sometimes occur called angiomatosis. The tumors of the central nervous system ( CNS ) are called hemangioblastomas These tumors, whether benign (usual) or malignant (rarer), may cause problems, for example angiomas in the brain or spinal cord may press on nerve or brain tissue. As an angioma grows, the walls of the blood vessels may weaken and leak, causing damage to surrounding tissues. Blood leakage from angiomas in the retina can interfere with vision. Cysts may also grow around angiomas. VHL is a autosomal dominant disorder, but there is a wide variation in the date of onset of the disease, the organ system affected and the severity of effect. Untreated, VHL may result in blindness and permanent brain damage, death is usually caused by complications of malign tumors in the brain or kidney. Dr. Eugen von Hippel described the angiomas in the eye in 1904. Dr. Arvid Lindau described the angiomas of the

14. Von Hippel-Lindau Disease Internet links on von hippellindau disease. von hippel-lindau disease. Thus, tumors throughout the body are symptomatic of von hippel-lindau disease. http://rarediseases.about.com/cs/vonhippellindau/a/032104.htm

zJs=10 zJs=11 zJs=12 zJs=13 zc(5,'jsc',zJs,9999999,'') About Rare / Orphan Diseases Rare Diseases S - V Rare Diseases: V ... Rare cancers zau(256,152,145,'gob','http://z.about.com/5/ad/go.htm?gs='+gs,''); Is it a Rare Disease? Rare Diseases A - B Rare Diseases C - D Rare Diseases E - H ... Help zau(256,138,125,'el','http://z.about.com/0/ip/417/0.htm','');w(xb+xb); Stay Current Subscribe to the About Rare / Orphan Diseases newsletter. zau(256,152,100,'hs','http://z.about.com/5/ad/hs.htm?zIhsid=00',''); Search Rare / Orphan Diseases Email to a friend Print this page Stay Current Subscribe to the About Rare / Orphan Diseases newsletter. Suggested Reading Internet links on von Hippel-Lindau disease Most Popular ALD and Lorenzo's Oil The Elephant Man's Bones Reveal Mystery Prune Belly (Eagle-Barrett) Syndrome Progeria Syndromes ... Mad Cow Disease and Humans What's Hot Autoimmune Kidney Disease Tourette Syndrome Christmas Disease Bugs, PANDAS, and Tics ... Dystonia and Botox Injections Von Hippel-Lindau Disease From Mary Kugler Your Guide to Rare / Orphan Diseases Sign up for my Newsletter Brain, eye, and kidney tumors common

15. Von Hippel-Lindau Disease von hippellindau disease. Rare/Orphan Diseases Blog. von hippel-lindau disease This inherited disorder of chromosome 3 causes brain, eye, and kidney tumors. http://rarediseases.about.com/b/a/073696.htm

zJs=10 zJs=11 zJs=12 zJs=13 zc(5,'jsc',zJs,9999999,'') About Rare / Orphan Diseases Home Essentials ... Rare cancers zau(256,152,145,'gob','http://z.about.com/5/ad/go.htm?gs='+gs,''); Is it a Rare Disease? Rare Diseases A - B Rare Diseases C - D Rare Diseases E - H ... Help zau(256,138,125,'el','http://z.about.com/0/ip/417/0.htm','');w(xb+xb); Stay Current Subscribe to the About Rare / Orphan Diseases newsletter. zau(256,152,100,'hs','http://z.about.com/5/ad/hs.htm?zIhsid=00',''); Search Rare / Orphan Diseases Von Hippel-Lindau Disease Rare/Orphan Diseases Blog Main March 21, 2004 Von Hippel-Lindau Disease This inherited disorder of chromosome 3 causes brain, eye, and kidney tumors. The greatest risk of von Hippel-Lindau is the development of kidney cancer. Email a Friend Display Latest Headlines Read Archives Most Popular ALD and Lorenzo's Oil The Elephant Man's Bones Reveal Mystery Prune Belly (Eagle-Barrett) Syndrome Progeria Syndromes ... Mad Cow Disease and Humans What's Hot Autoimmune Kidney Disease Tourette Syndrome Christmas Disease Bugs, PANDAS, and Tics ... User Agreement

16. Von Hippel-Lindau Disease von hippellindau disease. What is von hippel-lindau disease (VHL)? von hippel-lindau disease (VHL) is a rare, genetic multi-system http://www.clevelandclinic.org/health/health-info/docs/1300/1360.asp?index=6118&

17. Neurocutaneous Syndromes von hippellindau disease von hippel-lindau disease is a genetic disorder involving the abnormal growth of blood vessels. It usually http://kidshealth.org/parent/medical/genetic/neurocutaneous_p4.html

KidsHealth Parents Medical Problems Ataxia Telangiectasia Ataxia telangiectasia is a progressive degenerative disease that involves a large number of major body systems. According to the Ataxia-Telangiectasia Children's Project, A-T is a recessive genetic disease, meaning that both parents carry the gene that could combine to cause A-T in their children but do not have the disease themselves. Two parents with the mutated gene have a 25% chance of having a child affected by A-T. A-T is usually noticed in the second year of life as a child develops problems with balance and slurred speech caused by ataxia (lack of muscle control). The onset of ataxia signifies that the cerebellum, the part of the brain that controls muscle movement, is degenerating. Eventually, the lack of muscle control becomes severe enough for the child to require a wheelchair. Another symptom of A-T is the appearance of tiny, red, spiderlike veins in the corners of the eyes or on the ears and cheeks when exposed to sunlight. The veins are known as "telangiectases," and they are harmless. About 70% of children with A-T also have immune system problems that make them more susceptible to chronic upper respiratory infections, lung infections, and pneumonia. In many children, these infections, when combined with a weakened immune system, can be fatal. Children with A-T are also very susceptible to developing certain cancers, such as

18. Disease Directory : Genetic Disorders : Von Hippel-Lindau Family Village Links to chat rooms, web sites and information about Von Hippel Lindau s disease. Von Hippel Lindau disease - von hippel-lindau disease. http://www.diseasedirectory.net/Genetic_Disorders/Von_Hippel-Lindau/default.aspx

Wednesday, June 02, 2004 Genetic Disorders Aarskog Syndrome Aase Syndrome Ablepharon-Macrostomia Syndrome ... Genetic Disorders : Von Hippel-Lindau ALIANZA ESPA‘OLA DE FAMILIAS DE VON HIPPEL LINDAU-VHL (AEF-VHL) - Dedicada a difundir y ayudar a pacientes y familiares afectados con la enfermedad gen©tica y hereditaria de Von Hippel Lindau, VHL. Belangenvereniging Von Hippel Lindau - Belangenvereniging Von Hippel Lindau. De Belangenvereniging Von Hippel Lindau werd in de periode 1995-2000 lid van de VSOP. Meer informatie. Belangenvereniging Von Hippel-Lindau - Belangenvereniging Von Hippel-Lindau VHL is een erfelijke vorm van kanker. De belangenvereniging vertegenwoordigt alle betrokkenen das Von-Hippel-Lindau-Syndrom (VHL) - Vorwort. Das Von-Hippel-Lindau Syndrom (kurz VHL) ist eine erbliche Erkrankung. Die Wahrscheinlichkeit der Vererbbarkeit ist hoch eMedicine - von Hippel-Lindau Disease : Article by Arun Gulani, MD - von Hippel-Lindau Disease. Last Updated: August 6, 2001, Mortality/Morbidity: Untreated von Hippel-Lindau disease can cause serious visual impairment. Eye Cancer Network: Von Hippel Angioma - Von Hippel Lindau ...

19. Disease Directory : Von Hippel-Lindau Disease Diseases Genetic Disorders Von HippelLindau von hippel-lindau disease. Directory Listing. Title von hippel-lindau disease. Date http://www.diseasedirectory.net/detailed/25556.aspx

Wednesday, June 02, 2004 Genetic Disorders Aarskog Syndrome Aase Syndrome Ablepharon-Macrostomia Syndrome ... Von Hippel-Lindau : von Hippel-Lindau disease Directory Listing Title: von Hippel-Lindau disease Description: Date Added: 2/16/2004 7:03:07 PM URL: http://www.ability.org.uk/von.html

20. Neurofibromatosis & Von Hippel-Landau Disease Neurofibromatosis and von hippellindau disease. Other treatments for helping hearing or eyesight may be necessary. back to top. von hippel-lindau disease. http://www.wfubmc.edu/neuro/disease/landau.shtml

you are here: home landau ALS Brain Aneurysms/AVMs Brain Tumors Development Neurosurgery ... Movement Disorder Neurofibromatosis von Hippel-Lindau Disease Neuromuscular Pain Control Sleep Disorders Stroke ... Total Joint Replacement Neurofibromatosis and von Hippel-Lindau Disease Both neurofibromatosis and von Hippel-Lindau Disease are genetic disorders that vary widely from patient to patient and even within the same family. Treatments of both generally involve taking care of the symptoms. Neurofibromatosis Definition Neurofibromatosis is a genetic disorder of the nervous system. It causes tumors to grow on nerves and produces other abnormalities such as skin changes and bone deformities. It occurs in 1 in every 3,000 to 4,000 births. Symptoms may appear as early as birth, but usually by age 10. Most symptoms are mild and people can lead normal and productive lives. However, some symptoms can be severely debilitating. About 50 percent of the people affected with NF have a prior family history. Neurofibromatosis has been divided into two types, NF1 and NF2.

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