Epilepsy
Twelve trusted resources for education, treatment information, community support and advocacy, including seizure first aid and a 24/7 helpline.
Seizures are common in children with complex craniofacial conditions; Alex began having them after his first birthday, and it took months of appointments to bring them under control. These organizations connect individuals, families and professionals with guidance, research updates and ways to get involved through events, volunteering and awareness efforts.
Medical, educational and advocacy resources
Epilepsy Foundation
The leading U.S. resource for epilepsy education, research, advocacy, support groups and seizure first-aid training, with a 24/7 helpline and local chapters.
www.epilepsy.comCenters for Disease Control and Prevention
EpilepsyUp-to-date statistics, prevention strategies, seizure first-aid guidance and public health resources.
www.cdc.govCURE Epilepsy
Funds innovative research toward a cure and offers grant information, scientific breakthroughs and patient-focused resources.
www.cureepilepsy.orgAmerican Epilepsy Society
A professional medical organization advancing epilepsy science, research, education and clinical practice.
www.aesnet.orgMedlinePlus
EpilepsyA reliable medical encyclopedia linking to trusted information from the CDC, NINDS, the Epilepsy Foundation and the National Library of Medicine.
medlineplus.govEmpowering Epilepsy
Educational programs and peer support, including diagnosis-specific information and live events such as SUDEP forums.
www.empoweringepilepsy.orgEpilepsy Alliance America
A national network of nonprofit member organizations offering support groups, advocacy and community-based services.
epilepsyallianceamerica.org
Community and lived experience
PatientsLikeMe
Epilepsy communityAn online platform where people with epilepsy share real-world experiences, track symptoms and treatments, and connect through peer support.
www.patientslikeme.comExploring Epilepsy Today
Community support, lived-experience stories and resources such as MyEpilepsyTeam and related discussion forums.
www.exploringepilepsytoday.comEpilepsy Outlook (UK)
A UK-based charity providing regional support services, advice, awareness training and therapeutic programs including art therapy.
www.epilepsy-outlook.orgDravet Syndrome Foundation
Focused on Dravet syndrome and related genetic epilepsies, offering family support, research funding and international patient registries.
www.dravetfoundation.orgSeizure: European Journal of Epilepsy
A peer-reviewed medical journal publishing clinical research, treatment guidelines and scholarly reviews.
www.journals.elsevier.com
The Alexander Foundation has found these sites helpful. We list them as a starting point, not an endorsement, and we encourage every family to decide for themselves what is useful. Nothing here is medical advice.
Two ways to take the next step
You are not alone in this.
If your child has Cloverleaf Syndrome or another craniofacial condition and the bills are piling up, tell us what is happening. We help where we can, and we will point you to people who can help with the rest.
Every dollar reaches a family.
Nobody at the foundation is paid. Apart from minimal supplies and tax filing, every gift goes to families, hospitals, schools and books that change how children treat each other.