Citizen Health Partners with Sofie's Journey to Lead RARE Epilepsy Arena
At the 14th Annual Epilepsy Awareness & Education Expo
August 18, 2026
SAN FRANCISCO, CA and IRVINE, CA, August 2026 — Citizen Health today announced it is partnering with Sofie’s Journey to lead the RARE Epilepsy Arena at the 14th Annual Epilepsy Awareness & Education Expo, at the Disneyland Hotel Convention Center in Anaheim, California. The Expo is being held on November 16 and 17 and is free to attend. The event will be followed by Epilepsy Awareness Day on November 18. The RARE Epilepsy Arena on the Expo floor is entirely built for rare and genetic epilepsy communities. In 2023 this section of the expo drew 37 exhibitors, including 26 rare disease foundations. At this year’s event, Citizen Health will work alongside Sofie’s Journey to grow the number of rare foundations in the Arena, help coordinate its programming, and make sure the families who come find what they came for. More than 900 genes have now been identified as single-gene causes of developmental and epileptic encephalopathies. Each of those communities is small and scattered, made up of families used to being the only one in the room who has heard of their diagnosis.
“The families I see in rare genetic epilepsy are often the ones with the fewest answers and the longest road to get them,” said renowned epileptologist Amanda Pong, MD, MSc, who chairs the Expo’s clinical trials and research programming. “Getting them in front of clinicians who work in their specific condition changes what happens next. Anything that helps a family arrive organized and leave with a plan is worth doing.”
The Expo brings together epilepsy centers, epileptologists, surgeons and researchers from across the country and around the world, in one place, at no cost to families. That community and access are hard to find outside the Expo. A 2021 study in Epilepsy & Behavior found that eight U.S. states have no Level 4 comprehensive epilepsy center at all, and that the centers which do exist cluster in metropolitan areas and are significantly less likely to sit in the country’s most disadvantaged counties.
“Rare families have always been part of this community, and they deserve the same access everyone else gets when they walk through our doors,” said Brad Levy, Event Director and Co-Founder of Epilepsy Awareness Day at Disneyland® Resort, and Sofie’s dad. “The top epilepsy centers in the country come to this building. My goal has always been that the family carrying a diagnosis nobody has heard of gets to sit down with those doctors, the same as anyone else. Citizen Health knows these families and these groups, and I asked them to help us build this part of the Expo.”
The RARE Epilepsy Arena Agenda
Alongside the rare disease foundations, clinicians and foundations that already make up the Arena, the 2026 program adds a new genetics feature from Sofie’s Journey and two sessions built specifically for rare epilepsy families:
- Let’s Talk Genetics. New for 2026 and sited at the center of the Arena, the exhibit is staffed with genetic epileptologists and genetic counselors who families can sit down with and ask about a genetic report they do not understand, a result that came back inconclusive, or testing that has not been offered to them. For most families in the room it is the first time those questions get answered in person, by someone who does this every day.
- Time with the specialists. Structured opportunities for families to meet epileptologists and researchers who are already in the room, building on the physician access the Expo is known for. In its 2023 recap, EADDL described families who met a surgeon at the Expo and went on to have successful epilepsy surgery, with many now seizure free.
- An introduction to Citizen’s AI teammate, Ari. Hands-on sessions where families can see what an advocate in their pocket actually does, and set it up in a few minutes if they want it.
Rare epilepsy organizations interested in participating in the 2026 RARE Epilepsy Arena should reach Jenny Nguyen-Halstead, Communications and Social Media Director (jenny@epilepsyawarenessday.org). Both organizations are anticipating historic attendance at this year’s event.
Ari: AI Built for Rare Communities
Ari is Citizen Health’s AI teammate for patients and caregivers. For a family managing a rare epilepsy, Ari gathers records from every provider into one place the family controls, turns dense clinical and genetic reports into plain language, and keeps a running log of symptoms that a parent can capture just by texting or talking. Seizures are logged alongside sleep, mood, GI symptoms and medication changes, in one thread rather than five different apps, so patterns are easier to see and easier to bring to a neurologist.
Ari also handles the work that piles up around care. It prepares the summaries a second opinion needs, drafts messages to the care team, keeps track of referrals and prior authorizations, drafts appeals when insurance says no, and flags research and trials worth asking a doctor about. Most of this Ari does on its own, checking in by text when something needs a decision, without the family having to ask.
“It’s a constant resource on my phone. I’m reaching out at 3 o’clock in the morning asking questions. As a single mom, it’s worth everything to me,” said Amber K., whose child has KCNT1-related epilepsy.
Ari asks permission before acting on a family’s behalf, and nothing is shared without their say-so. Ari is not a medical advisor and does not give medical advice.
“Families in the rare epilepsy communities deserve the best of what technology can do, not whatever gets built for everyone else first,” said Nasha Fitter, Co-Founder and Chief Business Officer of Citizen Health, and Co-Founder and CEO of the FOXG1 Research Foundation, which exhibits in the Arena. “My daughter has a rare genetic epilepsy. Brad has built the one place where families like mine and the best doctors in epilepsy are under the same roof, and we want to make sure nobody leaves that room empty-handed.”
Registration for the 14th Annual Epilepsy Awareness & Education Expo is free and open at epilepsyawarenessday.org. Families can learn more about Ari at citizen.health/join/epilepsy-awareness-day.
About Sofie’s Journey and Epilepsy Awareness Day at Disneyland Resort
Sofie’s Journey, Inc. is a 501(c)(3) nonprofit founded by Brad and Candy Levy after their daughter Sofie’s successful epilepsy surgery. It produces the Epilepsy Awareness & Education Expo and Epilepsy Awareness Day, held each November in Anaheim, California, with founding partners the Danny Did Foundation and the Chelsea Hutchison Foundation. In the organization’s words, the goal is “to help educate as many people as possible and teach them to advocate and find the cure they are looking for.” The first Epilepsy Awareness Day was held in November 2013. Learn more at epilepsyawarenessday.org.
About Citizen Health
Citizen Health is building the future of healthcare, starting with rare and complex diseases. Its AI teammate, Ari, helps patients and caregivers interpret medical records, track symptoms, manage appointments and insurance, and connect to the next best step in their care. Citizen Health is headquartered in San Francisco, California. Learn more at citizen.health.
Media Contacts
Citizen Health: Amanda Wells | awells@sloanepr.com
Sofie’s Journey / EADDL: Jenny Nguyen-Halstead, Communications and Social Media Director | jenny@epilepsyawarenessday.org | (323) 743-3801
