New lysosomal acid lipase deficiency fund opens

The PAN Foundation today opened a new financial assistance program for people living with lysosomal acid lipase deficiency providing up to $2,100 per year for eligible patients.    

Lysosomal acid lipase deficiency—also known as Wolman disease or cholesterol ester storage disease—is a rare inherited condition characterized by the inability to breakdown and use fats and cholesterol properly. While symptoms may present differently for each person, some common symptoms include distention of the abdomen, abdominal pain, calcification within the adrenal glands, intellectual impairment, enlarged liver and spleen, jaundice, nausea and vomiting, and liver dysfunction or failure.  

According to the National Center for Advancing Translational Sciences’ Genetic and Rare Diseases Information Center, it is estimated that fewer than 5,000 people in the U.S. have lysosomal acid lipase deficiency. The most severe and rarest form of the disease, known as Wolman disease, begins in infancy and, unless successfully treated with hematopoietic stem cell transplantation, may result in death by age one year. The less severe form, known as cholesterol ester storage disease, can begin from childhood to late adulthood and shares many of the same symptoms of the infantile form. This form can also result in various complications, including liver failure, heart attack, and stroke.   

“With no cure and facing life-threatening complications, those diagnosed with lysosomal acid lipase deficiency need access to medications and treatments that require expensive out-of-pocket costs,” said PAN President and CEO Kevin L. Hagan. “Thanks to the generous contributions of our donors, we are honored to provide assistance to help ease the financial burden of this disease for patients and their families.” 

Patients who qualify are eligible to receive $2,100 per year in financial assistance to pay for the deductibles, co-pays, and coinsurance costs associated with their treatment for lysosomal acid lipase deficiency.

Eligibility requirements

To get financial assistance for lysosomal acid lipase deficiency, patients must:    

  • Be receiving treatment for lysosomal acid lipase deficiency.  
  • Have health insurance that covers the qualifying medication or product.   
  • Have an income that falls at or below 400 percent 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 

Apply for transportation assistance 

PAN grant recipients may also qualify for transportation assistance to allow them to get to and from activities that improve their overall health outcomes, including healthcare services, social connection and support, and healthy and nutritious food. Check your eligibility to learn more. 

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