PAN opens new neurofibromatosis insurance premium fund

The PAN Foundation today opened a new neurofibromatosis insurance premium financial assistance program, providing up to $4,700 to help eligible patients pay for their out-of-pocket health insurance premium costs.

Neurofibromatosis (NF) encompasses a group of rare genetic disorders that cause tumors to grow on nerve tissue, including the brain, spinal cord, and eyes. There are three distinct types of NF: NF1, NF2, and schwannomatosis (SWN). NF1, also known as von Recklinghausen’s disease, accounts for 96 percent of cases and leads to skin alterations and bone issues. The Neurofibromatosis Network estimates that there are about 120,000 people in the United States living with some form of NF. 

“While there are treatments for neurofibromatosis, there is still no cure for this rare disease,” said Kevin L. Hagan, PAN’s President and CEO. “We are grateful that due to PAN’s generous donors we are able to offer this new assistance program for individuals facing this difficult diagnosis so they can focus on their health and wellbeing.”

Patients who qualify are eligible to receive up to $4,700 in financial assistance to pay for their health insurance premiums. Learn more about PAN Foundation health insurance premium funds and other support we provide on our website. 

Check the status of PAN’s neurofibromatosis financial assistance funds and find out if you’re eligible:

Eligibility requirements

To get premium assistance for neurofibromatosis, patients must: 

• Be getting treatment for neurofibromatosis.
• Have health insurance that covers the qualifying medication or product.
• Take a medication or product listed on PAN’s list of covered medications.
• Have an income that falls at or below 400 percent of the federal poverty level.
• Reside and receive treatment in the United States or U.S. territories. (U.S. citizenship is not a requirement)

Note that an individual currently enrolled in PAN’s neurofibromatosis copay fund may also be eligible for this new neurofibromatosis premium fund. Individuals may enroll in both the neurofibromatosis copay and premium programs as long as they meet eligibility requirements and funding is available.

How to apply

You can apply online 24/7 through the PAN portal or by phone. To apply by phone, call us at 1-866-316-7263 Monday through Friday, 9 a.m. to 5:30 p.m. ET.

Healthcare professionals can apply online through the PAN portal or by phone on behalf of their patients. 

Other patient support services at PAN

Apply for a transportation grant 

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 more. Check your eligibility to learn more. 

Connect with a patient support organization 

PAN recognizes that people with serious health conditions—and their families and caregivers—need support beyond financial assistance. That’s why we partner with more than 25 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. Learn more about our partners. 

About the PAN Foundation 

As a leading charitable foundation and healthcare advocacy organization, the PAN Foundation is dedicated to accelerating access to treatment for those who need it most and empowering patients on their healthcare journeys. We provide critical financial assistance for treatment costs, advocate for policy solutions that expand access to care, and deliver education on complex topics—all driven by our belief that everyone deserves access to affordable, equitable healthcare.    

Since 2004, our financial assistance programs have helped more than 1.2 million people to start or stay on life-changing treatment. In addition, we’ve achieved major policy victories that increase access to care, mobilized patient advocates to call for change, and educated people nationwide on critical healthcare-related topics. We’re committed to working towards a future where equitable health outcomes are a reality for all. Learn more at panfoundation.org.