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
www.childrenswish.org

Children's Wish Foundation of Canada
www.childrenswish.ca

Make-A-Wish Foundation
www.wish.org

Sunshine Foundation
www.sunshinefnd.com

Taryn's World
www.tarynsworld.org

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 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.

SSI

SSA Benefits for Children with Disabilities
www.ssa.gov

SSA Benefit Information Publications
www.ssa.gov

Publications

PubMed - Includes over 900 articles about cystinosis; has a search function
www.pubmed.gov

New England Journal of Medicine - Use search function to search for cystinosis articles
www.nejm.org

Springer - Use search function to search for cystinosis
www.springer.com

Pharmaceutical

The Merck Manual
www.merck.com

Raptor Pharmaceuticals Corp
 www.raptorpharma.com

Sigma-Tau Pharmaceuticals, Inc.
www.sigmatua.com

Parenting and Families

Exceptional Parent Magazine
www.eparent.com

Parent Helping Parents
www.php.com

Parenthood Web
www.parenthoodweb.com

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
www.aafp.org

CNN Health Page
www.cnn.com/health

Emory University MedWeb
www.medweb.emory.edu/MedWeb

Food and Drug Administration
www.fda.gov

Healthfinder
www.healthfinder.gov

University of Kansas Medical Center
www.kumc.edu/gec - Excellent Resource!

MedExplorer
www.medexplorer.com

Medinex
www.medinex.com

MedScape
www.medscape.com

National Libarary of Medicine
www.nlm.nih.gov

Radiological Society of North America
www.rsna.org

Web Medical Literature
www.webmedlit.com

Wikipedia
www.en.wikipedia.org/wiki/Cystinosis

Yahoo! Health related search engine
dir.yahoo.com/Health

Medical Information

American Association of Kidney Patients
www.aakp.org

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

Cystinosis Central
medicine.ucsd.edu

Cystinosis Central
biochemgen.ucsd.edu

Cystinosis Information Brochure for Medical Professionals.

Emergency Information Form for Children with Special Needs

Cystinosis Chapter Emedicine.com
author.emedicine.com

European Rare Disease Organization
www.eurodis.org

Genetic Alliance
www.geneticalliance.org

Laboratory Conversion Site
dwjay.tripod.com

Laboratory Conversion Site w/ Table
www.vin.com

Med Help International
www.medhelp.org

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

National Kidney Foundation
www.kidney.org

NIH Office of Rare Diseases
rarediseases.info.nih.gov

National Library of Medicine
www.nlm.nih.gov

National Organization of Rare Disorders
www.rarediseases.org

Nephkids Website
cnserver0.nkf.med.ualberta.ca

Nephrology News & Issues
www.nephnews.com

OMIM Online Mendelian Inheritance in Man
www.ncbi.nlm.nih.gov
Johns Hopkins University--Good Cystinosis Information

Reuters Health
www.reutershealth.com

Spanish Language Health Information Site
www.cuidadodesalud.gov/enes/

Transplant Resources
www.transweb.org

Virtual Hospital
www.vh.org

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

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