PAN opens mucopolysaccharidosis type VII fund

Today, the PAN Foundation opened a financial assistance copay fund designed to help with out-of-pocket medication costs for eligible patients living with mucopolysaccharidosis type VII (MPSVII).

PAN’s mucopolysaccharidosis type VII copay assistance program provides a grant of $1,875 for out-of-pocket expenses for covered medications. If patients need more assistance within the same 12-month period and the fund is open, they can apply for additional funding, receiving up to $7,500 total per year.

MPS VII, also known as Sly syndrome, is an ultra-rare genetic condition that affects most organs with varying severity in symptoms across affected individuals. Typically, signs and symptoms begin to show during early childhood, although on average, it can take more than six years to receive an accurate diagnosis, according to the National Center for Advancing Translational Sciences’ Genetic and Rare Diseases Information Center.

“Parents of children living with MPS VII face immense challenges both emotionally and financially, often facing high treatment costs across the lifespan,” said Kevin L. Hagan, PAN Foundation’s President and CEO. “We are glad to be able to offer financial assistance to help lighten some of that burden, making sure every child has access to the care they need. As always, we’re grateful to our donors who allow us to provide these families with the financial support they deserve.”

Eligibility requirements

To get copay assistance for mucopolysaccharidosis type VII, patients must:

• Be receiving treatment for mucopolysaccharidosis type VII
• Reside and receive treatment in the United States or U.S. territories (U.S. citizenship is not a requirement)
• Have insurance that covers the qualifying medication or product
• Take a medication or product listed on PAN’s comprehensive list of covered medications
• Have a household income that falls at or below 500 percent of the federal poverty level

How to apply

We encourage you to apply online through the PAN portal, but if you prefer 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

Sign up for FundFinder 

Developed by the PAN Foundation, FundFinder is a free website that helps you track more than 200 patient assistance funds from nine charitable organizations. You can sign up for free email or text alerts when a disease assistance fund you’re interested in opens at PAN or another organization. Learn more and sign up today.  

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Whether you have questions about the clinical trial process or need help using our trial finder to explore nearby options, our warm and knowledgeable ComPANion Access Navigators are just a phone call away. They can help you with general clinical trial education, answer your questions, equip you with conversation starters, assist you in finding trials, and help you sign up for trial alerts. Call us at 1-855-329-5969 Monday through Friday, 9:00 a.m. to 5:30 p.m. ET. You can also learn more about clinical trials by visiting our clinical trials education hub.

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 connections and support, and more. If the fund is closed, we encourage you to join the wait list to be notified when the fund re-opens.

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 1.3 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.