Patient and family support at AES 2026

Dec 4–8, 2026 Denver, CO ~6.2k attendees Website

32 organizations at AES 2026 present work in patient and family support. 32 of them have their own page in this guide. As of Oct 8, 2026.

All 180 organizations at AES 2026 →

Showing 1–20 of 32 organizations
OrganizationAES 2026 Attendance
cacna1a.org
Patient groups and foundations
Patient group for CACNA1A-related disorders, connecting families, clinicians and scientists to speed diagnosis, treatment and a cure.
Booth
Exhibiting at Booth N417
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
CDG Care
Colorado Springs, CO
cdgcare.org
Patient groups and foundations
Patient group for congenital disorders of glycosylation, rare inherited metabolic conditions.
Booth
Exhibiting at Booth N123
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
childneurologyfoundation.org
Patient groups and foundations
National nonprofit supporting children and families with neurologic conditions through information, education, one-on-one support and designated care centers.
Booth
Exhibiting at Booth N313
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
CSNK2A1 Foundation
San Francisco, CA
csnk2a1foundation.org
Patient groups and foundations
Patient group for Okur-Chung neurodevelopmental syndrome, an ultra-rare genetic condition caused by CSNK2A1 variants.
Booth
Exhibiting at Booth N314
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
CURE SYNGAP1
Mill Valley, CA
curesyngap1.org
Patient groups and foundations
Family-led SynGAP Research Fund working to speed research toward a cure for SYNGAP1-related disorders and support affected families.
Booth
Exhibiting at Booth N116
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
curegrin.org
Patient groups and foundations
Patient group for GRI neurodevelopmental disorders (GRIN, GRIA and GRIK gene variants), whose symptoms include epilepsy.
Booth
Exhibiting at Booth N122
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
DEE-P Connections
Washington, DC
dee-p.org
Patient groups and foundations
Hub connecting families of children with developmental and epileptic encephalopathies to education and research resources.
Booth
Exhibiting at Booth 319
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
DLG4 SHINE Foundation
Colorado Springs, CO
dlg4shine.org
Patient groups and foundations
Patient group for DLG4-related synaptopathy that supports research and treatment development and offers families a support community.
Booth
Exhibiting at Booth N324
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
dravetfoundation.org
Patient groups and foundations
Funds Dravet syndrome and related epilepsy research, raises awareness and supports affected individuals and families.
Booth
Exhibiting at Booth N213
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
Dup15q Alliance
Norristown, PA
dup15q.org
Patient groups and foundations
Patient group for chromosome 15q duplication syndrome, offering family support and backing research and targeted treatments.
Booth
Exhibiting at Booth N218
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
Empowering Epilepsy
Beachwood, OH
empoweringepilepsy.org
Patient groups and foundations
Ohio nonprofit offering people with epilepsy and their families education, peer support and help managing treatment.
Booth
Exhibiting at Booth N412
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
epilepsypregnancy.com
Patient groups and foundations
Nonprofit resource on epilepsy and pregnancy, guiding clinicians and patients from contraception and prenatal planning to breastfeeding.
Booth
Exhibiting at Booth 3809
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
epilepsyallianceamerica.org
Patient groups and foundations
National network of local, regional and state epilepsy agencies that provide direct services to people with seizures.
Booth
Exhibiting at Booth N413
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
epilepsyalliancefl.org
Patient groups and foundations
Florida nonprofit and the state’s main agency for epilepsy programs and services, founded in 1971.
Booth
Exhibiting at Booth N423
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
epilepsy.com
Patient groups and foundations
National nonprofit for people with epilepsy, offering education, advocacy, research support, a helpline and local offices.
Booth
Exhibiting at Booth 2508
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
scn2a.org
Patient groups and foundations
Patient advocacy group for SCN2A-related disorders that funds research, builds community and advocates for affected families worldwide.
Booth
Exhibiting at Booth N418
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
Hope for HIE
West Bloomfield, MI
hopeforhie.org
Patient groups and foundations
Advocacy and support group for families of children with hypoxic-ischemic encephalopathy, a top structural cause of neonatal seizures.
Booth
Exhibiting at Booth N114
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
scn8aalliance.org
Patient groups and foundations
Supports people affected by SCN8A disorders and fosters collaboration among families, researchers, clinicians and industry toward treatments.
Booth
Exhibiting at Booth 320
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
kcnq2cure.org
Patient groups and foundations
Nonprofit working toward a cure for KCNQ2-related disorders through research, awareness and family support.
Booth
Exhibiting at Booth N214
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm
LGS Foundation
San Diego, CA
lgsfoundation.org
Patient groups and foundations
Nonprofit for people affected by Lennox-Gastaut syndrome, advancing research, awareness, education and family support.
Booth
Exhibiting at Booth N115
Sat, Dec 511:45am–5:30pmSun, Dec 610:00am–4:00pmMon, Dec 710:00am–2:00pm

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Not affiliated with the American Epilepsy Society. Organization details are derived from AES’s published exhibitor list and each exhibitor’s own profile and website. Submit a correction