We’ve gathered a range of resources from external sources to assist with the daily challenges faced by those living with cystinosis. Here you’ll find information on a multitude of topics including, camps, emergency resources, flight resources, genetic information and insurance, among others.
General Resources
- Cystinosis Adult Care Excellent (ACE) Initiative – Executive Summary
- Cystinosis Adult Care Excellent (ACE) Initiative – Results and Recommendations
- Cystinosis Brochures
- Cystinosis Comic Books – A unique series covering the high-level science behind cystinosis and some of the feelings that may be associated with living with a rare disease
- English/Spanish Translation Services (free)
- Grade 1: Cystinosis Presentation
- Grade 3: Cystinosis Presentation
- General Muscle Strength Tips from Megan
- Global Genes RARE Concierge – Patient Services
- Help Obtaining a Computer & Internet Service: PCs for People
- Incontinence Products
- Navigating the Hospital (disponible en Español)
- Medical Home
- Transplantation and Donation
- (Post) Transplant from the NKF
- Transportation Assistance
- TSA Disabilities and Medical Conditions
- Virtual Doctor Visit Guide: American Kidney Fund
- Will Planning (from NORD)
- Skip directly to the area of interest to you by clicking a topic below:
- Books on Tape
- Camps
- COVID-19
- Education
- Emergency Resources
- Flight Resources
- Genetic Information
- Insurance
- Mental Health
- Nutrition
- Parenting
- Siblings
Books on Tape
- 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
Camps
- A Kid Again
- American Kidney Fund Virtual Camp
- Camp Okawehna
- Ruth Gottscho Dialysis and Children’s Kidney Program
COVID-19
- American Society of Transplantation: COVID-19 Vaccine FAQ Sheet [updated Aug 13, 2021]
- Center for Disease Control (CDC) and Prevention
- COVID-19 & Kidney Transplants
- COVID-19 Vaccine – CRN Medical Advisory Board and Scientific Advisory Board Members’ Statement
- COVID-19 Vaccines for Moderately to Severely Immunocompromised People [Aug 18, 2021]
- COVID-19 Update: FDA Authorizes Additional Vaccine Dose for Certain Immunocompromised Individuals [Aug 12, 2021]
- Consortium for Citizens with Disabilities
- Coronavirus Vaccine Tracker
- European Reference Networks: Summary on priorities and contra-indications for COVID-19 vaccinations
- National Health Council: COVID-19 Awareness
- New England Journal of Medicine – Covid-19 Vaccine — Frequently Asked Questions
- New England Journal of Medicine – Safety and Efficacy of the BNT162b2 mRNA Covid-19 Vaccine
Education
- Academy for Educational Development
- Federal Resource Center for Special Education
- Federation for Children with Special Needs
IEP Checklist App [iPhone]
The Parent Educational Advocacy Training Center (PEATC) offers an Individualized Education Program (IEP) Checklist iPhone app. School-aged students with disabilities are provided an Individualized Education Program designed to support their unique educational needs. The IEP Checklist App helps parents of students with special needs become better-informed advocates by making IEP information easier to access. The newest version of the app has active links to the relevant language in the federal regulations; allows users to record the IEP meeting or record notes; and has the capacity to print out notes and click on a checklist as requested items are discussed. Learn more about this free app. - IEPs – Sample Goals
- Office of Special Education Programs (OSEP)
- Scholarship Resources for cystinosis patients and siblings: accredited collegiate or vocational program
- Taking Control – Optimizing Your Potential as a Young Adult With a Rare Disease by Global Genes
- Templates and tips for letters and discussions with teachers/coaches/friends explaining a child’s condition
Emergency Resources
Flight Resources
- Air Care Alliance
- Air Lifeline Home Page
- Angel Flight
P: 918 749-8992 - Mercy Medical Airlift
- NPATH: PatientTravel.org
- Miracle Flights
P: 800 359-1711 - National Patient Travel Center
P: 800 296-1217
Genetic Information
- American Society for Human Genetics
- Brochure – Avrobio Investigational Gene Therapies for Lysosomal Storage Disorders
- Gene Clinics Cystinosis Profile
- Genetics Home Reference – NIH
- Genetics Testing Registry for Nephropathic Cystinosis – NIH
- Map of the Human Genome NIH
- National Human Genome Research Institute
- National Society of Genetics Counselors
- STAR Center for Lysosomal Diseases
- University of Kansas Medical Center: Professional Genetic Societies
Insurance
- ABLEnow
- Families USA
- Family Voices
- Follow the Dollar – Pharmaceutical Supply Chain
- InsureKidsNow – Center for Medicare and Medicaid Services
- Medicare for ESRD
- Medicaide
- Partnership for Prescription Assistance
- RxAssist – Patient Assistance Program Center
- SSA Benefits for Children with Disabilities
- State Health Facts
- The Assistance Fund
Mental Health
- 7 Cups – Online health and therapy provider (US)
- Aware Depression Support Group (N. Ireland)
- Beyond Blue Mental Health Support (Australia)
- CALM – Campaign Against Living Miserably (UK)
- Child Mind Institute – For Families (US)
- Crisis Text Lines
- US text HOME to 741741
- Canada text HOME to 686868
- UK text HOME to 85258
- Depression UK
- Find a Therapist: Psychology Today (US)
- Kids Help Line – Free counseling service for ages 5 to 25 (Australia) 1800 55 1800
- Living with Cystinosis: Meeting Your Mental Health Needs
- MHA –Mental Health America (US)
- Mental Health First Aid (US)
- NAMI – National Alliance on Mental Illness (US)
- National Suicide Prevention Hotline (US) 1-800-273-8255
- Teen Line – Teens helping teens via call, text, email, and message board (US)