Paraganglioma & Pheochromocytoma
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 & DeductibleMaximum Award Level
$10,000 Per Year
- 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 Paraganglioma & Pheochromocytoma
Paragangliomas and Pheochromocytomas and are rare tumors associated with ganglia of the sympathetic nervous system. Paragangliomas grow along the nerve pathways of the peripheral nervous system. There are two types of paragangliomas, sympathetic and parasympathetic. Sympathetic paragangliomas grow along nerve pathways found in the head, neck, chest cavity, abdomen, pelvis and bladder, outside of the adrenal gland. Pheochromocytomas are a type of sympathetic paraganglioma that develop in the adrenal medulla of the adrenal gland. Sympathetic paragangliomas produce hormones called catecholamines, such as epinephrine (adrenaline) or norepinephrine control the “fight or flight” response in response to stress that can cause rapid heartrate, high blood pressure, breathing, headaches and sweating. These hormone surges can lead to life-threatening health problems, such as a stroke, heart attack, hemorrhage, or sudden death.
The majority of parasympathetic paragangliomas are located in the head, neck and skull base along the glossopharyngeal and vagus nerves usually do not produce hormones. The parasympathetic nervous system controls involuntary body functions such as saliva production and digestion.
Paragangliomas are typically slow growing, but approximately 40-50% can become cancerous and spread distantly to other parts of the body. These tumors can affect people of any age but most often show up between the ages of 25 and 50, it is estimated that up to 25% of paragangliomas are inherited. Other names for this condition include: familial paraganglioma syndrome, familial paraganglioma syndrome, FPGL FPGL/PHEO, hereditary paraganglioma-pheochromocytoma syndromes, glomus tumor, extra-adrenal pheochromocytomas, chromaffin and non-chromaffin paragangliomas, primary adrenal gland tumor, adrenal gland chromaffin paraganglioma, adrenal gland chromaffinoma, adrenal gland paraganglioma, intraadrenal paraganglioma.
- Good Days877-968-7233
- Healthwell Foundation800-675-8416
- Leukemia & Lymphoma Society800-955-4572
- National Organization for Rare Disorders800-999-6673
- Needy Meds800-503-6897
- Patient Access Network Foundation866-316-7263
- Patient Services Inc.800-366-7741
- The Assistance Fund855-845-3663