The physicians and specialists at the University of California San Diego have started a multi-specialty Cystinosis Clinic, including, among other specialists, Dr. Bruce Barshop and Dr. Annette Feigenbaum (Biochemical Genetics), Dr. Nadine Benador (Nephrology), Dr. Ranjan Dohil (Gastroenterology), Dr. Doris Trauner (Neurology), Dr. Ron Newfield (Endocrinology), Dr. David Granet (Ophthalmology), and Dr. Stephanie Cherqui (Laboratory Scientist).
The clinics will be held on Monday mornings (every 3 months at present), at the UCSD/Rady Children's Hospital Medical/Research Offices at 7910 Frost Street, San Diego.
Looking for a quick way to find data on the various facets of health and insurance coverage in your state? Check out statehealthfacts.org.
Statehealthfacts.org is a project of the Henry J. Kaiser Family Foundation and is designed to provide free, up-to-date, and easy-to-use health data for all 50 states. Statehealthfacts.org provides data on more than 700 health topics. They've recently added a children's health facts category.
Staying on top of all your medications, vitamins, and supplements can be challenging. Here are 3 tips and resources to help you be smart and safe with taking medications.
American Academy of Family Physicians
CNN Health Page
Emory University MedWeb
Food and Drug Administration
University of Kansas Medical Center
www.kumc.edu/gec - Excellent Resource!
National Libarary of Medicine
Radiological Society of North America
Web Medical Literature
Yahoo! Health related search engine
American Association of Kidney Patients
Cysteamine Eye Drops (NIH Eye Clinic + other pharmacies)
Locate Eye Drops
Cystinosis Chapter Emedicine.com
European Rare Disease Organization
Laboratory Conversion Site
Laboratory Conversion Site w/ Table
Med Help International
National Kidney Foundation
NIH Office of Rare Diseases
National Library of Medicine
National Organization of Rare Disorders
Nephrology News & Issues
OMIM Online Mendelian Inheritance in Man
Johns Hopkins University--Good Cystinosis Information
Spanish Language Health Information Site
WBC Cystine Handout - Orphan Europe
Need a White Blood Cell cystine level?