1. CYSTINOSIS FOUNDATION HOMEPAGE cystinosis Foundation was founded in 1983 and is an all volunteer, nonprofit organization dedicated to providing services for those suffering from cystinosis. http://www.cystinosisfoundation.org/

United Kingdom Australia Mexico 604 Vernon Street, Oakland, CA 94610 1-800-392-8458 501 (C) (3) Charitable Organization Ireland Netherlands Germany Greetings to all families! annual family conference to be held in Ann Arbor, Michigan. Dr. Truaner and her team will again be testing children at this conference. See you There!! Click Here for the flyer! More details shortly.. ALSO The CYSTINOSIS FOUNDATION, United States , in conjunction with AIRG SPAIN , and AIRG FRANCE , is pleased to announce the Third International Cystinosis Congress will take place in Tarragona, Spain, July 9-11, 2004. Researchers, physicians, families and individuals from diverse backgrounds will gather once again in a supportive environment to connect with one another and share their knowledge and feelings about this chronic disease. Click Here: General Information - Agenda - Presenters - Registration DEANNA LYNN POTTS SCHOLARSHIP Children with cystinosis are living longer, thanks to medical science and therefore, embarking on careers. These careers require education. Education is expensive, yet something we do not want to deprive our children of in our world today. Due to the financially draining medical costs, it might prove difficult to send a child to college. Through this fund, we hope to help some of those students. A $1000 scholarship awarded annually.

2. Cystinosis Research Network The cystinosis Research Network is dedicated to finding a cure for cystinosis while improving diagnosis, treatment, and quality of life for individuals and families affected by cystinosis. Vision. The cystinosis Research Networks (CRN) vision is the discovery of improved treatments and ultimately a cure for cystinosis http://www.cystinosis.org/

Updated: Wednesday, May 26, 2004 Cystinosis Information CRN Summer Family Retreat in Utah CRN Summer Family Retreat in North Carolina Support Group Resources Cystinosis Research ... Cystinosis Registry CRN Scientific Review Board CRN Mission CRN Board of Directors How You Can Help ... Legislation Vision. The Cystinosis Research Network’s (CRN) vision is the discovery of improved treatment s and ultimately a cure for cystinosis. Mission. The Cystinosis Research Network is a volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis. Breaking NEWS!

3. Cystinosis Central Information about this disorder, conferences, data for physicians, updates and links. http://medicine.ucsd.edu/cystinosis/INDEX.htm

This is the OFFICIAL source for information on Cystinosis. University of California, San Diego Department of Pediatrics , Division of Metabolic Disease Last Update: April 20, 2004 Effective 9/1/03, all test prices will increase. Please refer to the following link for updated pricing: NEW PRICE LIST Conferences General Info. Updates ... Body Surface Area For Physicians Dose Calculations Laboratory Tests UCSD Cystine Determination Lab Cystagon Cystinosis Foundation Other Links Our Patients questions/comments: cystine@ucsd.edu NOTICE: Cystagon TM is supplied by CVS ProCare. For refills please contact (888) 700-0024. here ppt.

4. EMedicine - Cystinosis : Article By Ewa Elenberg, MD cystinosis Nephropathic cystinosis is an autosomal recessive lysosomal storage disease caused by defective transport of the amino acid cystine out of lysosomes. The stored cystine is poorly Three types of cystinosis have been described based on the age at http://www.emedicine.com/ped/topic538.htm

(advertisement) Home Specialties CME PDA ... Patient Education Articles Images CME Patient Education Advanced Search Link to this site Back to: eMedicine Specialties Pediatrics Nephrology Cystinosis Last Updated: March 25, 2003 Rate this Article Email to a Colleague Synonyms and related keywords: cystine storage disease, Fanconi syndrome, infantile cystinosis, infantile nephropathic cystinosis, adolescent cystinosis, adult cystinosis AUTHOR INFORMATION Section 1 of 11 Author Information Introduction Clinical Differentials ... Bibliography Author: Ewa Elenberg, MD , Assistant Professor, Department of Pediatrics, Renal Section, Texas Children's Hospital, Baylor College of Medicine Ewa Elenberg, MD, is a member of the following medical societies: American Academy of Pediatrics American Medical Association , and American Society of Nephrology Editor(s): Uri S Alon, MD , Director of Research and Education, Children's Mercy Hospital of Kansas City; Professor, Department of Pediatrics, Division of Pediatric Nephrology, University of Missouri at Kansas City; Robert Konop, PharmD

5. Cystinosis cystinosis. Enzyme Tests The disease may be diagnosed by measurement of 35Scystine incorporation. cystinosis. The disease is noticed at about 6 months of age with symptoms of renal tubular renal disease also occurs, referred to as "intermediate" or "adolescent" cystinosis. http://www.sas-centre.org/genetic/genpages/lysstodiscystinosis.html

Cystinosis The disease is noticed at about 6 months of age with symptoms of renal tubular dysfunction presenting as the Fanconi syndrome. Renal loss of phosphate leads to hypophosphataemia and rickets. Later there is glomerular damage. In the eye corneal deposits are seen due to the presence of crystalline cystine, and photophobia occurs in most patients. A later onset form with milder renal disease also occurs, referred to as "intermediate" or "adolescent" cystinosis. Enzyme Tests: The disease may be diagnosed by measurement of

6. NORD - National Organization For Rare Disorders, Inc. General Discussion. cystinosis is a rare inherited disorder characterized by the impaired people with Intermediate cystinosis or Juvenile (Adolescent) cystinosis, kidney and eye http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Cystinosis

7. Cystinosis Foundation Brochure Facts About cystinosis. (From the Brochure). WHAT IS cystinosis? cystinosis is a metabolic disease characterized by an abnormal http://www.cystinosisfoundation.org/brochure2.html

F acts About Cystinosis (From the Brochure) WHAT IS CYSTINOSIS? Cystinosis is a metabolic disease characterized by an abnormal accumulation of the amino acid cystine in various organs of the body such as the kidney, eye, muscle, pancreas, and brain. Different organs are affected at different ages. IS IT INHERITED? The disease is inherited in an autosomal recessive fashion, meaning that each parent of a child with cystinosis carries one defective gene and one normal gene. The parents never have any signs of the disease. WHAT CAUSES CYSTINOSIS? The cystine content of cystinotic cells averages 50-100 times the normal value. The cause is a defect in the transport of cystine out of a cell compartment called the lysososme, in which cystine accumulates. Because of cystine's low solubility, this amino acid forms crystals within the lysosomes of cells, and this is probably what destroys the cells. WHAT ARE THE SYMPTOMS? If cystinosis patients receive a kidney transplant and reach adulthood, their new kidney will not be affected by the disease. However, without cysteamine treatment (see below), they can develop complications in other organs due to the continued accumulation of cystine throughout the body. These complications can include muscle wasting, difficulty swallowing, diabetes, heypthroidism, and blindness. Not all older patients develop these problems, however. CAN CYSTINOSIS BE TREATED?

8. Cystinosis Central This is the OFFICIAL site for information on cystinosis. Statement of Policy and Disclaimer The cystinosis web page is intended to provide a source of advice on diagnosis or treatment of cystinosis or any other medical condition http://medicine.ucsd.edu/cystinosis

This is the OFFICIAL source for information on Cystinosis. University of California, San Diego Department of Pediatrics , Division of Metabolic Disease Last Update: April 20, 2004 Effective 9/1/03, all test prices will increase. Please refer to the following link for updated pricing: NEW PRICE LIST Conferences General Info. Updates ... Body Surface Area For Physicians Dose Calculations Laboratory Tests UCSD Cystine Determination Lab Cystagon Cystinosis Foundation Other Links Our Patients questions/comments: cystine@ucsd.edu NOTICE: Cystagon TM is supplied by CVS ProCare. For refills please contact (888) 700-0024. here ppt.

9. General Info: Cystinosis General Info cystinosis. cystinosis is a rare genetic disease affecting both children and adults. it Genetics of cystinosis. Types http://medicine.ucsd.edu/cystinosis/geninfo.html

General Info: Cystinosis Cystinosis is a rare genetic disease affecting both children and adults. it is usually diagnosed in early infancy. It is estimated that 2,000 individuals worldwide have cystinosis, but exact numbers are difficult to obtain since this disease often goes undiagnosed. With early detections and proper treatment, children and adults with cystinosis can avoid serious health complications, such as kidney failure and neurological damage. Cystinosis is a rare autosomal recessive disease affecting approximately 400 individuals in the United States. The disease is characterized by elevated levels of intracellular cystine due to a defect in the lysosomal cystine transporter. Accumulation of cystine results in multiple organ damage with renal damage being the most pronounced in the first decade of life. Individuals with cystinosis experience both tubular dysfunction (renal Fanconi Syndrome) and glomerular deterioration. The renal Fanconi Syndrome usually occurs within the first year of life. Glomerular deterioration progresses throughout the first decade of life resulting in end-stage renal failure. Genetics of Cystinosis Types of Cystinosis - Infantile - Late Onset - Benign Literature Reference articles about cystinosis.

10. ClinicalTrials.gov - Information On Clinical Trials And Human Research Studies: Resources Help What's New About. Browse By Condition By Disease Heading Nutritional and Metabolic Diseases cystinosis. Include trials that are no longer recruiting patients. 3 studies http://clinicaltrials.gov/ct/screen/BrowseAny?path=/browse/by-condition/hier/BC1

11. What Is Cystinosis? cystinosis is a rare disease that primarily affects children. cystinosis also causes complications in other organs of the body. http://www.cystinosis.org/what_is_cystinosis.htm

Resources of Cystinosis Information Cystinosis Information Brochure for Medical Professionals available in pdf format Cystinosis Article - New England Journal of Medicine - July 11, 2002 Cystinosis Central Cystinosis Chapter Emedicine.com ... Gene Clinics Cystinosis Profile Cystinosis is a rare disease that primarily affects children. Cystinosis is a genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs of the body. Cystine crystals accumulate in the kidneys, eyes, liver, muscles, pancreas, brain and white blood cells. Without specific treatment, children with cystinosis develop end stage kidney failure at approximately age nine. Cystinosis also causes complications in other organs of the body. The complications include muscle wasting, difficulty swallowing, diabetes, and hypothyroidism. It is estimated that at least 2,000 individuals worldwide have cystinosis, thought exact numbers are difficult to obtain because the disease is often undiagnosed and/ or misdiagnosed. Cystagon, new treatments, and research of Cystinosis are giving hope for a bright future for children and adults with Cystinosis.

12. GeneReviews: Cystinosis Your browser does not support HTML frames so you must view cystinosis in a slightly less readable form. Please follow this link to do so. http://www.geneclinics.org/query?dz=ctns

13. Cystinosis - Information / Diagnosis / Treatment / Prevention home rare disorders cystinosis cystinosis. cystinosis Central Information about this disorder, conferences, data for physicians, updates and links. http://www.healthcyclopedia.com/rare-disorders/cystinosis.html

Home Health cyclopedia All Topics by Category The Good Health Search Engine Health Conditions A-Z Gurus ... rare disorders > cystinosis Cystinosis Information / Diagnosis / Treatment / Prevention External links (marked with an arrow ) open in a new window. This site is a web directory and does not offer medical advice. We cannot take responsibility for information found on listed sites. This Page Related Topics Medical Definition Health News Web Directory: Related Topics: Genetic Disorders Urological Disorders Medical Definition: University of Newcastle-upon-Tyne Medical Dictionary: "cystinosis" Health News: Search millions of published articles for news on Cystinosis Modern Medicine Aging The Ardell Wellness Report HealthFacts Medical Post Medical Update Men's Health and the National Women's Health Report Note: Subscription required to access the full text of articles. Web Directory: Cystinosis Central Information about this disorder, conferences, data for physicians, updates and links. Cystinosis Foundation Includes brochures, FAQs, medical exchange, research, and a message forum as well as details about the organization and its events, conferences and fund raising. Cystinosis Research Network Information about the organization and their mission. Extensive database about the disease as well as support groups, research and links to other resources.

14. Cystinosis Foundation Brochure Choose from the menu below, or click here to read it all! Facts About cystinosis. Is it Inherited? What Causes cystinosis? What are the Symptoms? Can http://www.cystinosis.com/brochure.html

T he Cystinosis Foundation Brochure French Italian German Choose from the menu below, or click here to read it all! Facts About Cystinosis Is it Inherited? What Causes Cystinosis? What are the Symptoms? Can Cystinosis be Treated? Is Prenatal Detection Available? What are Possible Future Developments? How Can You Help? Membership Application What is the Cystinosis Foundation? ... Home Information presented in this brochure is intended for general education purposes only, and should not be construed as advising or diagnosis or treatment of this or any other medicla condition.

15. Cystinosis Support Page cystinosis. cystinosis Foundation 17 Lake Ave Piedmont, CA 94611 Phone (510) 6016940 Online information cystinosis http://www.kumc.edu/gec/support/cystinos.html

Cystinosis Cystinosis Foundation 17 Lake Ave Piedmont, CA 94611 Phone: (510) 601-6940 Online information: Cystinosis Central , University of California, San Diego, Department of Pediatrics, Division of Metabolic Disease Also See: National organizations with information on genetic conditions or birth defects - variety of resources 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

16. Cystinosis Welcome to The cystinosis Book, Welcome. Welcome to the websites of The cystinosis Book and Jimmy s Association For Kidney Children in Leeds, England. http://www.thecystinosisbook.com/

Welcome to The Cystinosis Book Member of the National Network for the Arts in Health, the Society of Authors and the Writers Guild of Great Britain. Welcome About the Book Arts In Health Welcome Welcome to the websites of The Cystinosis Book and Jimmy's Association For Kidney Children in Leeds, England. THIS site is split into two sections. For information on The Cystinosis Book, click on 'Book Research'. For information about Jimmy's, click on 'Charity Profile'. For the visually impaired, click on the font size buttons to increase or reduce text size. To contact the book or the charity, please click 'contact us' Links to other websites reflect the topics discussed in the book. These sites will include health orientated resources. We encourage the mutual exchange of links, if you would like to appear on our links page please contact us. You can access further pages on the site by clicking on the + icon on the task bar at the bottom. If you wish to know more about kidney failure or Cystinosis, click on the + button below. Any reproduction of the text, images and/or content on this website, in whole or in part, without the express written consent of the owner is prohibited by law.

17. Cystinosis About the Book. What is The cystinosis Book? The cystinosis Book is a full length book that will provide information about cystinosis and kidney failure. http://www.thecystinosisbook.com/index.php?cat_id=1&

18. Cystinosis Foundation Ireland Homepage http://ireland.cystinosis.com/

19. Welcome To The Cystinosis Foundation UK! cystinosis Foundation UK & Eire http://www.cystinosis.org.uk/

20. Cystinosis,Cystine Storage Disease,Fanconi II,Lignac-Fanconi Syndrome,Infantile cystinosis,Cystine Storage Disease,Fanconi II,LignacFanconi Syndrome,Infantile cystinosis,Juvenile cystinosis,Nephropathic cystinosis,Nephrotic-Glycosuric http://www.icomm.ca/geneinfo/cystinosis.htm

For Information on Workshops and Seminars for Special Needs Children click here The GAPS INDEX to Information on the Internet about Genetic Disorders and Birth Defects Genetic Information and Patient Services, Inc. (GAPS) HOME DISORDERS GLOSSARY Cystinosis (as defined by the National Organization for Rare Disorders also known as: Cystine Storage Disease Fanconi II Lignac-Fanconi Syndrome Disorder Subdivisions Infantile Cystinosis Juvenile Cystinosis Nephropathic Cystinosis Nephrotic-Glycosuric-Dwarfism-Rickets-Hypophosphatemic Syndrome de Toni-Fanconi Syndrome Intermediate Cystinosis Dwarfism with Rickets Adolescent Cystinosis Lignac-Debre-Fanconi Syndrome Benign Cystinosis Infantile Fanconi Syndrome with Cystinosis Aminoaciduria-Osteomalacia-Hyperphosphaturia Syndrome Abderhalden-Kaufmann-Lignac Syndrome Adult Cystinosis Cystinosis is a rare inherited disorder characterized by the impaired transport of cystine out of parts of cells called lysosomes. Cystine is an amino acid found in many different proteins in the body. Lysosomes, which are membrane bound particles within cells, aid in intracellular digestive function.

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