Get the answers and the support you’re looking for
From finding a doctor to finding a community of support, these educational tools and resources are available to support you throughout your diagnosis journey.
Find the right doctor
Finding the right doctor, specialist, or center is one of the most important steps in your journey toward a specific diagnosis. Visit the links here to find one nearest you, and remember that you may have to get a second or even third opinion. It’s important to seek out a specialist or center with experience working with rare and severe epilepsies. You can also reach out to advocacy organizations for help, resources, and to find a specialist near you.
Explore a treatment option
It may be time to explore a treatment option and talk to your doctor for more information. Don’t wait to get answers.
Importance of genetic testing
Approximately 30% to 40% of epilepsy cases may be genetic. Genetic testing may help uncover an accurate diagnosis, which can open the door to more appropriate treatment plans and information on how to improve long-term outcomes. That’s why it’s so important to know which tests are available to you. Click here to learn about common genetic tests, including how the tests are performed and information on insurance coverage.
Genetic testing and counseling resourcesFind a genetics clinic
Downloadable resources
Seizures bring a level of uncertainty few can understand—and in most cases, parents are the first responders. That’s why we compiled top caregiver-recommended tools and resources for easy access.
Seizure readiness kit
Advice from a Dravet syndrome mom on how to put together a personalized seizure readiness kit to help you feel more prepared.
Face sheet
A template that can be filled out and given to a medical team in the event of an emergency to provide accurate information and clear direction so that no time is lost.
Individualized Education Plan (IEP) worksheet
Tips to help you navigate the annual goals and support services designed for each individual’s needs, ranging from speech therapy, counseling, curriculum modifications, to mobility amenities.
Lennox-Gastaut syndrome (LGS) brochure
A PDF with detailed educational information and resources to help you and your loved one understand and navigate an LGS diagnosis.
Dravet syndrome brochure
Educational information and important resources in a PDF to help you and your loved one once you have a Dravet syndrome diagnosis.
Tuberous sclerosis complex (TSC) brochure
A PDF with important resources and educational information to help you and your loved one learn more about TSC.
Advocacy
Advocacy groups are a great way to connect with other families who may be going through what you’re going through. It’s a community of support that brings families together to share advice, support, participate in events, learn about grant opportunities, or simply feel at ease in each other’s presence. For many, the opportunity to connect with a disease-specific community of people who truly know what they are going through made a world of difference.
Federal and state programs
A number of programs are available to help you gain access to education, financial assistance, and home healthcare services. If you don’t qualify for Medicaid or Social Security Disability Insurance (SSDI) benefits, you can apply for a state waiver to get the support you need. We’ve put some helpful links all in one place.
Federal programs
There are several federal programs that offer various levels and categories of assistance to people with disabilities.
SSI/SSDI
Supplemental Security Insurance (SSI) and SSDI are programs that offer benefits to disabled people (including children) who have limited income and/or are unable to work due to their disability.
MEDICAID
Medicaid provides health coverage to millions of Americans, including people with disabilities.
State programs
Check your state to find out about available programs, such as state financial assistance and resources for those with disabilities. Home and community-based services (HCBS) waivers are also available to help people with long-term care services and support at home.
State waivers
The National Academy for State Health Policy provides a list of resources for children and youth with special healthcare needs.