Niemann-Pick Disease

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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.

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Fund Type

  • Co-pay, Co-insurance & Deductibles
  • Office visits and administration charges related to treatment
  • Medical Insurance premiums

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 Niemann-Pick Disease

Niemann-Pick disease (NPD) is a group of inherited metabolic disorders known as lipid storage diseases that affects the body’s ability to metabolize fat, cholesterol and lipids. Harmful quantities of lipids accumulate in the spleen, liver, lungs, bone marrow and brain cells, causing progressive deterioration of the nervous system. NPD is divided according to the altered gene and symptoms. Niemann-Pick Types A (NPA) the most severe form, occurs in early infancy causing profound brain damage leading to an early death, is caused by mutations in the SMPD1 gene. Niemann-Pick Type B (NPB), also caused by mutations in the SMPD1 gene, usually occurs in pre-teen years with symptoms including ataxia and peripheral neuropathy, affects the liver, spleen and lungs, but generally does not affect the brain. Most people affected with NPB survive into adulthood. Niemann-Pick Type C (NPC) can appear at any age, is divided into Type C1, caused by a mutation in the NPC1 gene, affects the brain and gut; while Type C2, caused by a mutation in the NPC2 gene, is more severe than Type C1 but mostly affects the lungs. C2 have problems with speech and swallowing that worsen over time, eventually interfering with feeding. NPC individuals often experience progressive decline in intellectual function and about one-third have seizures. The majority of children with NPC die before age 20 and it is rare for any person with NPC to reach age 40.

Other names for this condition: lipid histiocytosis, neuronal cholesterol lipidosis, neuronal lipidosis, NPD, sphingomyelin lipidosis, sphingomyelin/cholesterol lipidosis and sphingomyelinase deficiency

Niemann-Pick Disease Resources
Medication & Financial Assistance Resources
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