New Pompe disease fund opens

The PAN Foundation today opened a new financial assistance program for people living with Pompe disease, providing up to $6,800 per year for eligible patients. 

Pompe disease is a rare, inherited disorder caused by the buildup of glycogen in certain organs, muscles, and tissues that impairs their functions. Though this buildup can accumulate everywhere in the body, the disease primarily affects the heart and skeletal muscle system.  
The National Institute of Neurological Disorders and Stroke estimates that this rare and often fatal disorder is present in 1 in 40,000 people. There are three types of Pompe disease and all three result in high out-of-pocket costs totaling hundreds of thousands of dollars.  

“This rare disease may require a team of specialists to provide treatment, and going without treatment can be fatal,” said PAN President and CEO Kevin L. Hagan. “We’re thankful that because of our generous supporters, we are able to offer this essential financial assistance for patients facing a long and expensive treatment plan”  
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 Pompe disease.  

Eligibility requirements 
To get financial assistance for Pompe disease, patients must:   

  • Be getting treatment for Pompe disease. 
  • 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. Check your eligibility to learn more.

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 from the Extra Help program.  

Connect with a patient support organization  
People with serious health conditions—and their families and caregivers—need support beyond financial assistance. We partner with more than 20 leading patient advocacy groups to connect people to communities that can offer support with the complex physical, emotional, and practical realities of life-threatening, chronic, and rare diseases.  

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