Many faced with a rare disease or condition often experience financial burdens in seeking out adequate educational tools, therapeutic devices, medical equipment, resources, treatment options, and more. As described by Dravet Syndrome News, the Dravet Syndrome Foundation is working to address this financial burden through its Patient Assistance Grants (PAG) program. Altogether, the PAG Program provides resources and financial support to patients and caregivers within the DSF Family Network, which can be joined here.

Interested in learning more or submitting an application? You can find all application information here, or you can email [email protected] to learn more.

PAG Program

What is Dravet Syndrome?

Typically, SCN1A gene mutations cause Dravet syndrome, a rare genetic epileptic encephalopathy that is often treatment-averse. Infants with Dravet syndrome experience prolonged febrile and non-febrile seizures which begin in the first year of one’s life. As Dravet syndrome progresses, patients may also experience psychomotor delays, myoclonic and partial seizures, ataxia (impaired balance and coordination), growth and nutritional problems, cognitive and motor impairment, and behavioral disorders.

Significant risk factors contributing to a Dravet syndrome diagnosis include seizures which last for over 10 minutes at a time; seizures which occur on one side of the body; and seizures triggered by a warm water bath in infants (aged 1 year or less). Learn more about Dravet syndrome.

PAG Program Grants

Overall, the Dravet Syndrome Foundation has been running its PAG program from March through December for around 12 years so far. In all, the Foundation has awarded over $178,000 in funding to families with Dravet syndrome. This is extremely beneficial for this community. After all, the Dravet Syndrome Foundation shares that $106,378 per year is the average financial burden for families. Thus, this grant money can help families acquire the necessary tools and technology to best benefit their children.

The grants are awarded in $1,500 chunks, with a $5,000 lifetime cap. According to the PAG Program page, the grants cover items such as:

• Adaptive strollers/wheelchairs/bikes
• Cooling vests
• Standers
• Seizure helmets/monitors
• Sleep-safe pillows
• Educational devices, such as iPads
• Communication devices
• Tools and supplies associated with the keto diet

However, the program will not cover therapeutic costs, respite assistance, the acquisition or training of service animals, or any medical co-pays. Regardless, the Dravet Syndrome Foundation hopes that the program can relieve some of the financial stress for families across the globe. To learn more about what you need to do to apply, head over here.