Multi-specialty UCSD Cystinosis Clinic

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.

If you are interested, please contact Denise Young, RN, at 858-576-1700 X4642, or send email to This email address is being protected from spambots. You need JavaScript enabled to view it. or to This email address is being protected from spambots. You need JavaScript enabled to view it.. We will require information ahead of time, for insurance authorization to be arranged and for arrangements for medical records to be released and forwarded.

Wish Organizations

Children's Wish Foundation International

Children's Wish Foundation of Canada

Make-A-Wish Foundation

Sunshine Foundation

Taryn's World

State Facts for Health Insurance and Other Health Info

Looking for a quick way to find data on the various facets of health and insurance coverage in your state? Check out 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. provides data on more than 700 health topics. They've recently added a children's health facts category.


SSA Benefits for Children with Disabilities

SSA Benefit Information Publications


PubMed - Includes over 900 articles about cystinosis; has a search function

New England Journal of Medicine - Use search function to search for cystinosis articles

Springer - Use search function to search for cystinosis


The Merck Manual

Horizon Pharma

Leadiant Biosciences

Parenting and Families

Exceptional Parent Magazine

Parent Helping Parents

Parenthood Web

Medication Management

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.

  • Tell your healthcare team about the medications and supplements you take and any allergies. List them all on a wallet card.
  • Ask questions about your medicine. Use this list of sample questions.
  • Stay with your treatment plan. Create a system to remind you to take your medicine -- you can use this app.
  • Check out Your Medicine: Be Smart. Be Safe. for more information about keeping up with your medication.

Medical Search Sites

American Academy of Family Physicians

CNN Health Page

Emory University MedWeb

Food and Drug Administration


University of Kansas Medical Center - Excellent Resource!




National Libarary of Medicine

Radiological Society of North America

Web Medical Literature


Yahoo! Health related search engine

Medical Information

American Association of Kidney Patients

Cysteamine Eye Drops (NIH Eye Clinic + other pharmacies)
Locate Eye Drops

Cystinosis Central

Cystinosis Central

Cystinosis Information Brochure for Medical Professionals.

Emergency Information Form for Children with Special Needs

Cystinosis Chapter

European Rare Disease Organization

Genetic Alliance

Laboratory Conversion Site

Laboratory Conversion Site w/ Table

Med Help International

Mitomed Diagnostic Laboratory at UC, Irvine - Blood Test Code for Cystinosis

National Kidney Foundation

NIH Office of Rare Diseases

National Library of Medicine

National Organization of Rare Disorders

Nephkids Website

Nephrology News & Issues

OMIM Online Mendelian Inheritance in Man
Johns Hopkins University--Good Cystinosis Information

Reuters Health

Spanish Language Health Information Site

Transplant Resources

Virtual Hospital

WBC Cystine Handout - Orphan Europe
Need a White Blood Cell cystine level?


CRN Newsletter Signup - Popup
  1. Stay up-to-date with the latest information from the Cystinosis Research Network by joining our email list.

  2. First Name
    Invalid Input
  3. Last Name
    Invalid Input
  4. You must enter a valid email.