New paroxysmal nocturnal hemoglobinuria disease fund opens

The PAN Foundation today opened a financial assistance program for people living with paroxysmal nocturnal hemoglobinuria. Paroxysmal nocturnal hemoglobinuria, also known as Marchiafava–Micheli syndrome, is a rare disorder in which red blood cells break down prematurely, which can lead to bone marrow dysfunction and in some cases, life-threatening blood clots.

According to the National Institute of Neurological Disorders and Stroke, there are between 400 and 500 cases diagnosed each year, most often in people in their 30s or 40s. Many people live with paroxysmal nocturnal hemoglobinuria for decades, depending on the severity of their symptoms. 

“Paroxysmal nocturnal hemoglobinuria affects the red blood cells, which help move oxygen throughout the body. This rare disease affects a small population, but at a great expense,” said PAN President and CEO Kevin L. Hagan. “We know that this assistance fund will offer relief to people living with paroxysmal nocturnal hemoglobinuria, who may require treatment for many years. We are grateful to our donors for supporting this fund and easing the burden on these patients.”

Patients who qualify are eligible to receive $6,800 per year in financial assistance to pay for the deductibles, copays, and coinsurance costs associated with their treatment for paroxysmal nocturnal hemoglobinuria.  
Eligibility requirements 
To get financial assistance for paroxysmal nocturnal hemoglobinuria, patients must:   

  • Be getting treatment for paroxysmal nocturnal hemoglobinuria. 
  • Have health insurance that covers the qualifying medication or product.  
  • Have an income that falls at or below 400% of the federal poverty level. 

How to apply 
Patients or caregivers applying on their behalf can apply for assistance using the PAN Foundation’s online patient portal. To apply on behalf of a patient, providers can use the provider portal, while pharmacists can use the pharmacy portal. A series of how-to guides are also available for the patient portal, including common tasks like creating an account and applying for assistance online. 

Other patient support services at PAN 

Transportation assistance 
PAN grant recipients may also qualify for transportation assistance to allow them to get to doctor’s appointments and pharmacy visits.  

Free application support for the federal Extra Help program 
The Extra Help program—also known as the Low-Income Subsidy program—is administered by the Social Security Administration and was designed to assist people with their Medicare prescription drug plan costs.  
Thousands of Medicare beneficiaries—many of whom are PAN grant recipients—may qualify for state or federal assistance from the program but don’t know that they are eligible. Patients can create or log in to their patient portal account to see if they are eligible for free application assistance for the Extra Help program.  

About the PAN Foundation 
The PAN Foundation is an independent, national 501 (c)(3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic, and rare diseases with the out-of-pocket costs for their prescribed medications.  

Since 2004, we have provided more than 1 million underinsured patients with $4 billion in financial assistance. Partnering with generous donors, healthcare providers, and pharmacies, we provide the underinsured population access to the healthcare treatments they need to best manage their conditions and focus on improving their quality of life. Learn more at


Liz Eckert, Senior Director of Marketing and Communications