Please e-mail CRN@cystinosis.org to suggest additional resources for this page.

Click on the category below to go to the resources for that category.

Books on Tape
Cystinosis Organizations
Disabilities
Education
Financial
Flight Resources
Genetic Information
Legal
Medicaid
Medical Information
Medical Search Sites
Parenting and Families
Pharmaceutical
Publications
SSI
Support Resources
Wish Organizations

Books on Tape  top

National Library Service for the Blind and Physically Handicapped (NLS), Library of Congress
Recording for the Blind & Dyslexic
The American Printing House for the Blind


Cystinosis Organizations top

UCSD Cystine Determination Lab
Cystinosis Research Foundation
Cystinosis Foundation USA
Cystinosis Australia
Cystinosis UK
Cystinosis Foundation Germany
Cystinosis Foundation Ireland
Cystinosis Mexico AC


Disabilities top

A.R.C Developmental disabilities group - contact information.
Family Village


Education  top

Academy for Educational Development
Band-aides and Blackboards
Federal Resource Center for Special Education
Federation for Children with Special Needs
Office of Special Education Programs (OSEP)
The BIG PAGE of Special Education Links
The National Information Center for Children and Youth with Disabilities
Transition planning guide for adolescents with health care needs and disabilties: a guide for parents and teens


Financial  top

Children's Health Insurance Program
Families USA Foundation
Family Voices
Health Insurance Portability Bill
Institute for Child Health Policy
UnitedHealthcare
Pharmacare Specialty Pharmacy

Pharmacare Specialty Pharmacy administers a patient assistance program which is provided by Mylan Pharmaceuticals for those patients who do not have insurance coverage to obtain their cystagon prescription. Interested parties should contact the Pharmacare Reimbursement Counseling Center at 1-888-598-8052 for more information regarding program specifics.


Flight Resources top

Air Care Alliance
Air Lifeline Home Page
Angel Flight (918) 749-8992
Mercy Medical Airlift
NPATH: PatientTravel.org
Midwest Airlines
Miracle Flights (800) 359-1711
National Patient Travel Center (800) 296-1217
Southwest Airlines (214) 792-4103
Additional Flight Resources



Genetic Information top

List of Genetic Centers University of Kansas Medical Center--Excellent resource!
genetic-info.com
Lyssomal Disease Testing Laboratory
Map of the Human Genome NIH
Professional Genetic Societies University of Kansas Medical Center
Society for the Study of Inborn Errors of Metabolism United Kingdom
The National Human Genome Research Institute
OMIM Online Mendelian Inheritance in Man Johns Hopkins University--good cystinosis information
Genetic Alliance
National Society of Genetics Counselors

Legal  top

The Commission on Mental and Physical Disability Law
The Health Law Resource

Medicaid top

Medicaid Waivers
Katie Beckett and 1115 Waivers
Wisconsin Medicaid Eligibility and Benefits (Katie Beckett)
The Medicaid Clearinghouse


Medical Information top

American Association of Kidney Patients
Laboratory Conversion Site
Laboratory Conversion Site w/ Table Cystinosis Central
Resources for Cysteamine Eye Drops (NIH Eye Clinic + other pharmacies)
NIH Office of Rare Diseases
OMIM Online Mendelian Inheritance in Man Johns Hopkins University--good cystinosis information
National Library of Medicine
The National Organization of Rare Disorders
Nephkids Website
Nephrology News & Issues
Online Medical Dictionaries
Reuters Health
Med Help International
The Genetic Alliance
The National Kidney Foundation
The Virtual Hospital
Transplant Resources
Emergency Information Form for Children with Special Needs


Medical Search Sites top

ACHOO WEB Medical Search Engine
American Academy of Family Physicians
Atlantic Health Promotion Research Centre
CNN Health Page
Dr. Greene's SitePediatric information from a pediatrician
Emory University MedWeb
Food and Drug Administration
Healthfinder
IHP Net Health Resources
University of Kansas Medical Center Excellent resource!
MED Connect
MedExplorer
Medinex
MedScape
National Libarary of Medicine
Pediatric Database
PedInfo (Internet Resources)
Radiological Society of North America
Web Medical Literature
Yahoo! Health related search engine


Parenting and Families top

Exceptional Parent Magazine
Parent Helping Parents
Parents Place
Parenthood Web
Sibling Information Network


Pharmaceuticals top

The Merck Manual


Publications top

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


SSI top

ABA Children's SSI Project
Information About Disability From The SSA
SSA Benefits for Children with Disabilities
SSA Benefit Information Publications


Support Resources top

Alliance of Genetic Support Groups
Contact a Family (UK)
University of Kansas Medical Center
National Organization of Rare Diseases
NIH Office of Rare Diseases
Re-evaluation Counseling Also known as Co-counseling



Wish Organizations top

Children's Wish Foundation International
Children's Wish Foundation of Canada
Make-A-Wish Foundation
Other children's wish groups
Sunshine Foundation
Taryn's World