1. Von Hippel-Lindau (VHL) Family Alliance Home Page Includes a description of the disease, treatment options and prognosis. Find details on current research being undertaken. What is von hippellindau disease (VHL)? Is there any treatment? http://www.vhl.org/

Basic Facts About VHL Managing Your Health Information for Health Care Professionals Research ... Press Room Families, Friends, Physicians, and Researchers working together to improve diagnosis, treatment, and quality of life for people affected by von Hippel-Lindau disease. Language Support en español em Português en français auf deutsch ... Teen Page Support Groups United States Other Countries Feedback VHL Links Welcome! You are visitor number since July 1, 2000 Has this site been helpful to you? Please help keep this resource available for yourself and others. Thank you! * The March issue of the newsletter is online, featuring an important series of papers on the growth patterns of hemangiomas, an interview with a clinical trial applicant, reactions to genetic testing, and a report on the first local meeting in Japan. Important meeting coming up! We will hold a U.S. regional meeting in Nashville , Tennessee, June 20-21 smaller format, less expensive, nearer to home. If you live one or two states away, please try to attend. Other regional meetings are being planned. Our new affiliate group in Japan has its own website . The Japanese font set is required to see the Japanese characters. Kochi medical school hosts the VHL Handbook in Japanese, and is translating it also into Chinese!

2. Von Hippel-Lindau (VHL) Family Alliance Home Page Information about the organization and the disease. Includes FAQs, newsletter, handbook, meeting schedule Category Health Conditions and Diseases Von Hippel-Lindau...... Friends, Physicians, and Researchers working together to improve diagnosis, treatment,and quality of life for people affected by von hippellindau disease. http://www.vhl.org/&e=747

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, and Researchers working together to improve diagnosis, treatment, and 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. Von Hippel-Lindau Disease (VHL) Canada Homepage Translate this page L'Alliance Familiale VHL. du Canada. Canadian VHL Family Alliance. http://www.vhl.org/canada/&e=747

5. NINDS Von Hippel-Lindau Disease Information Page Information sheet on this disease compiled by NINDS, the National Institute of Neurological Disorders Category Health Conditions and Diseases Von Hippel-Lindau...... More about von hippellindau disease (VHL), Studies with patients, NINDS von Hippel-LindauDisease Information Page Synonym(s) Angiomatosis Reviewed 05-09-2002 http://www.ninds.nih.gov/health_and_medical/disorders/vonhippe_doc.htm&e=747

6. NINDS Von Hippel-Lindau Disease Information Page Information sheet on this disease compiled by NINDS, the National Institute of Neurological Disorders and Stroke. 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.

7. Von Hippel-Lindau Syndrome / The Family Village Links to chat rooms, web sites and information about Von Hippel Lindau's disease.Category Health Conditions and Diseases Von Hippel-Lindau...... This is an open support forum for anyone interested in the exchange of informationamong individuals and families affected by von hippellindau disease (VHL). http://www.familyvillage.wisc.edu/lib_vonh.htm&e=747

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. HealthlinkUSA Von Hippel-lindau Disease Links health related topics. FindWhat. Click here for page 1 of Von HippellindauDisease information from the HealthlinkUSA directory. http://www.healthlinkusa.com/330ent.htm&e=747

10. HealthlinkUSA Von Hippel-lindau Disease Links officials will issue detailed guidelines today for vaccinating the entire US populationagainst smallpox within five days of an outbreak of the dreaded disease http://www.healthlinkusa.com/Von_Hippel-lindau_Disease.htm&e=747

11. VHL Description of the characteristics and the development of von hippel-lindau disease.Category Health Conditions and Diseases Von Hippel-Lindau......von hippellindau disease. Von Hippel Von-Hippel Lindau disease is transmittedgenetically. It is caused by a dominant type of gene. A child http://www.ncbi.nlm.nih.gov/cgi-bin/SCIENCE96/nph-gene?VHL&e=747

12. EMedicine - Von Hippel-Lindau Disease Article By Arun Gulani, von hippellindau disease. Last Updated August 6, 2001, Moore AJ OphthalmologicScreening of Von Hippel Lindau Disease. Eye 1992; 5 90-2. NOTE http://www.emedicine.com/oph/topic354.htm&e=747

13. EMedicine - Von Hippel-Lindau Disease Article Excerpt By Arun Excerpt from von hippellindau disease. Synonyms Please click hereto view the full topic text von hippel-lindau disease. Background http://www.emedicine.com/oph/byname/von-hippel-lindau-disease.htm&e=747

14. ICON Group International - Error The Official Patient's Sourcebook on von hippellindau disease (Angioblastomatosis;Angiomatosis Retinae; Angiophakomatosis retinae et cerebelli http://www.icongrouponline.com/health/Von_Hippel-Lindau_Disease.html&e=747

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15. Von Hippel-Lindau Disease Print this article. Find related articles By topic Neurology. By keywordsReceive HealthLink via email! Subscribe now . von hippellindau disease. http://healthlink.mcw.edu/article/921991275.html&e=747

16. Von Hippel-Lindau Disease von hippellindau disease. What is von hippel-lindau disease (VHL)? von Hippel-LindauDisease New Strategies in Early Detection and Treatment. http://www.clevelandclinic.org/health/health-info/docs/1300/1360.asp?index=6118&

17. Von Hippel-Lindau Disease By Jeff Allred von hippellindau disease by Jeff Allred von hippel-lindau disease (VHL), althoughonce thought to be rare, is one of the most common familial cancers. http://www-personal.umd.umich.edu/~jcthomas/JCTHOMAS/1997%20Case%20Studies/J.%20

18. Von Hippel-Lindau Syndrome story; Von Hippel Lindau Disease Genetic, Clinical, and Imaging FeaturesRadiology (March) 146629642,1995; von hippel-lindau disease http://www.kumc.edu/gec/support/von_hipp.html&e=747

19. HONselect - Hippel-Lindau Disease English HippelLindau Disease, - Cerebelloretinal Angiomatosis, Familial - LindauDisease - von hippel-lindau disease - Familial Cerebello-Retinal Angiomatosis http://www.hon.ch/HONselect/RareDiseases/C10.562.400.html&e=747

20. Txt001frb Molecular Pathology Of Von Hippel-Lindau Disease And 14 Seizinger, BR et al. (1991) Genetic flanking markers refine diagnostic criteriaand provide insights into the genetics of Von Hippel Lindau disease. http://www-ermm.cbcu.cam.ac.uk/01002654h.htm&e=747

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