New Rett syndrome fund opens

The PAN Foundation today opened a new financial assistance program for people living with Rett syndrome, providing up to $5,500 per year for eligible patients.

Rett syndrome is a rare, genetic neurological disorder that causes a loss of motor and spoken language skills, as well as other physical and neurological impairments in early life. It almost exclusively impacts females and is characterized by normal early growth and development followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability.

According to the National Institute of Neurological Disorders and Strokes, it is estimated that Rett syndrome affects one in every 10,000 to 15,000 live female births and is present in all racial and ethnic groups worldwide. Usually, the onset of initial symptoms—such as delays in gross motor skills—takes place between the ages of 6-18 months.

“There is no cure for Rett syndrome and treatments for its lifelong symptoms often result in high out-of-pockets costs for those affected and their families,” said PAN President and CEO Kevin L. Hagan. “Due to our generous donors, we are proud to offer this important financial assistance to help lessen the burden on patients and their families so they can focus on what really matters—improving their health and quality of life.”

Patients who qualify are eligible to receive $5,500 per year in financial assistance to pay for the deductibles, co-pays, and coinsurance costs associated with their treatment for Rett syndrome.

Eligibility requirements

To get financial assistance for Rett syndrome, patients must:    

  • Be receiving treatment for Rett syndrome.  
  • 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

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 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. Learn more about our partners.

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 nearly 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