Epilepsy Alliance America is committed to public policy advocacy efforts which advance federal, state and community policies and programs that benefit people with epilepsy and those who love and care for them.
Epilepsy Alliance America’s member organizations engage in local, state and national public policy advocacy efforts as appropriate for their organizations and the constituents they serve.
Epilepsies Action Network
Epilepsy Alliance America signed on as a partner of the Epilepsies Action Network in 2023. The Epilepsies Action Network is committed to advancing strategic national policies, innovative research programs, and funding to improve the lives and outcomes of people living with epilepsy.
Congressional Epilepsy Caucus
Epilepsy Alliance America is committed to helping grow the membership, reach and impact of the bipartisan Congressional Epilepsy Caucus which was launched by U.S. Representatives Jim Costa (CA-21) and Gregory Murphy , MD (NC-03).
Learn more about the Congressional Epilepsy Caucus:
Epilepsy Alliance America supports the Congressional Epilepsy Caucus – Epilepsy Alliance America
Telehealth
Patient & Provider Advocates for Telehealth
Epilepsy Alliance America is a member of this coalition which is working to keep telehealth accessible. The goal is to protect telehealth as a lasting, meaningful tool for patients and health care providers.
Review this flyer regarding at home testing and monitoring for telehealth appointments
Cannabis and/or CBD Products
Epilepsy Alliance America, as one of the authentic national advocacy organizations serving people with epilepsy, supports all constructive efforts of professional medical organizations, industry, private sector, governmental and regulatory entities towards the evidence-based use of all potentially beneficial treatments for Drug Resistant Epilepsy (DRE). To this extent, we recognize and emphasize an urgency of optimizing investigative, regulatory, and administrative efforts to eliminate diverse obstacles towards this goal with respect to medical cannabis.Epilepsy Alliance America believes that the final decision on the use of medical cannabis, and any other legal and legitimate medical treatment, should be a result of a transparent and trusted discussion between the person with epilepsy, their family and/or caregiver, and the treating healthcare provider(s). People with epilepsy would be served best by consulting with their healthcare provider(s) if considering the use of cannabis and/or CBD products. Epilepsy Alliance America recommends that individuals with uncontrolled epilepsy, whenever possible, seek the services of a pediatric or adult epileptologist to help manage their epilepsy.
American Brain Coalition
Epilepsy Alliance America has been a member of the American Brain Coalition since 2022.The American Brain Coalition (ABC) is a nonprofit organization comprised of the United States’ leading professional neurological, psychological, and psychiatric associations and patient organizations. Together, the organizations seek to advance the understanding of the functions of the brain, and to reduce the burden of brain disorders through public education and advocacy.
Sign On Letters
Epilepsy Alliance America signs on to letters to support issues that will impact epilepsy care across the country. Here are some of the letters that Epilepsy Alliance America has signed onto in the past.
Letter to President Biden urging more funding for the epilepsies. Sent February 13, 2024
About Epilepsy Alliance America’s Advocacy Efforts
The Advocacy efforts of Epilepsy Alliance America are guided by its Board of Directors with guidance and expertise provided by the National Professional Advisory Committee.
If you have a question about Epilepsy Alliance America’s Advocacy efforts, or have an issue that you believe Epilepsy Alliance America and/or our member organizations should be aware of, please email us at [email protected].
We encourage everyone to learn more about the Advocacy Issues that are important to the epilepsy community.
Reviewed and Updated: July 28, 2023