Cystinosis
Co-Pay Relief Program Fund Notices
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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 & Deductibles
- Office visits and administration charges related to treatment
- Medical Insurance premiums
$3,000 Per Year
- Household Income Requirements 500% 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.
- Accessia Health800-366-7741
- CancerCare866-55-COPAY
- Good Days877-968-7233
- Healthwell Foundation800-675-8416
- National Organization for Rare Disorders800-999-6673
- Needy Meds800-503-6897
- Patient Access Network Foundation866-316-7263
- The Assistance Fund855-845-3663
