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Cystinosis

Co-Pay Relief Program Fund Notices

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Status
Identified

This fund has been developed in response to patients who have contacted PAF for help with their medication expenses and could not find help. While this fund has been fully designed and we are ready to provide needed support to these patient communities, this fund is not yet able to accept applications for assistance as we are still working to secure charitable donations that will allow us to open it.

If you, or someone you know, would like to contribute to this fund, please visit our Donors page for more information on how to provide critical support for patients in need.

Fund Type

Co-pay, Co-Insurance & Deductible

Maximum Award Level

$3,000 Per Year

Eligibility Requirements
  • Household Income Requirements 400% or less of Federal Poverty Guideline (FPG) (adjusted for Cost of Living Index (COLI) and number in household)
  • Insurance Requirements All Insurance Types
  • Must reside and receive treatment in the United States.

About Cystinosis

Cystinosis is a rare, genetic, metabolic, lysosomal storage disorder characterized by accumulation of an amino acid called cysteine within the cells caused by mutations of the CTNS gene. Excess cystine damages cells and often forms crystals that can build up and cause problems in many organs and tissues. The kidneys and eyes are especially vulnerable to damage; the muscles, liver, pancreas, thyroid and brain may also be affected.

There are three distinct types of cystinosis: nephropathic (infantile) cystinosis is the most common and most severe form, intermediate cystinosis (nephropathic juvenile cystinosis), and non-nephropathic or ocular cystinosis.

Other names for this disorder include: cystine storage disease, nephropathic juvenile cystinosis, adolescent cystinosis, benign cystinosis.

Cystinosis Resources
Medication & Financial Assistance Resources
The Patient Advocate Foundation's (PAF) Co-Pay Relief (CPR) Program does not review the information contained on the website links provided for content, accuracy or completeness. Use of and access to this information is subject to the terms, limitations and conditions as outlined on the accessed websites. PAF Co-Pay Relief Program makes no representation as to the accuracy or any other aspect of the information contained on any website accessed from the CPR website, nor does PAF Co-Pay Relief Program necessarily endorse the website information provided. The information presented on the PAF Co-Pay Relief website is provided for general information only and is not intended as a substitute for medical care. Please talk with your healthcare provider about any information you acquire from this or any other website accessed through the PAF Co-Pay Relief program website.
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