2026 KCNT1 Family Conference
Friday, April 24
Join KCNT1 families from around the world for a full day of learning, connection, and community in Orlando.
The KCNT1 Orlando Family Conference is a one-day, family-focused gathering designed to bring caregivers together with clinicians, researchers, and advocates who understand the realities of living with KCNT1-related epilepsy. Whether you are newly diagnosed or have been on this journey for years, this day is about shared knowledge, shared experience, and shared hope.
While the program is still being finalized, the day will include a mix of clinical trial updates, educational presentations, practical guidance, and opportunities to connect with other families who truly “get it.”
We are partnering with CDG CARE, a rare disease organization. This partnership allows KCNT1 families to access discounted hotel rooms and shared amenities, helping keep the conference both comprehensive and cost-effective.
Why Families Should Join Us
The KCNT1 Orlando Family Conference is more than a meeting—it’s a chance to step out of isolation and into community.
Families join to:
Learn from clinicians, researchers, and advocates who understand KCNT1
Prepare for what may lie ahead, including clinical trials and changing care needs
Ask questions in a space designed for families, not rushed clinic visits
Connect with other parents and caregivers who truly understand this journey
Feel less alone while gaining clarity, reassurance, and practical guidance
Whether you are newly diagnosed or years into this path, this day is designed to meet families where they are—offering information, connection, and hope.
How to Join: Step-by-Step
We’ve designed registration to be as simple as possible. Here’s what to do:
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Complete your KCNT1 Orlando Family Conference registration through the KCNT1 Epilepsy Foundation.
This secures your place for the Friday, April 24, 2026 family conference. Register here. -
After registering, book your hotel using the discounted room block provided through our partnership with CDG CARE.
You may notice CDG CARE’s name on the hotel booking page—this is expected and allows KCNT1 families to access reduced rates. Click here. -
If you anticipate needing help with travel costs, you’ll have the opportunity to apply for travel assistance after registering.
Availability is limited, and additional details will be shared with registered families. -
Once your registration and hotel are confirmed, you can book flights that work best for your family’s schedule and needs.
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Many families choose to extend their stay and enjoy time together at the parks on Sunday. (and more!)
If you plan to do so, park tickets should be purchased separately and are optional. Please note the special partial day options! Click here.
Three Days of Fun!
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Friday April 24
Register to attend the Conference.
We are excited to team up with another rare disease organization to put on this conference. The CDG Care organization represents many genetic disorders and is happy to welcome our families who are walking similar journeys. Register to attend our conference, then book your hotel room before March 21st. Take advantage of the special options for Disney World tickets as well!
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Saturday April 25
The Epilepsy Awareness Day is on Saturday from 9 - 5 at “Disney’s Contemporary Resort” with many educational sessions to choose from. Register for free.
Join the Family Celebration party 6 pm-9 pm! The FREE Dance Party encourages all guest (especially children) to wear family friendly Disney themed costumes. This party will bring together families living with epilepsy for an evening of fun, food, dancing, activities and more! Pre- registration is required. (coming soon) Please remember this is a one-of-a-kind event. You don’t want to miss it!
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Sunday April 26
Join families at the Magic Kingdom/ Disney World and turn the park PURPLE! Purchase tickets here.
Conference Agenda
Location: Hilton Orlando Lake Buena Vista - Disney Springs® Area
7:45am - 8:30 am Continental Breakfast & Social
8:45 - 12:00 Presentations
12:00-1:15 Lunch
1:15 - 4:30 Presentations
6:00 Families Meet for Dinner & Entertainment
*Presentations may include topics such as how to prepare for clinical trials, neurological concerns over time, what symptoms to watch for, how to talk to your health care providers. (We may have presentations from biotech companies on their programs.)
Hilton Orlando Lake Buena Vista - Disney Springs®
1751 Hotel Plaza Boulevard
Lake Buena Vista, FL 32830, US
Our partner org, CDG Care has a block of rooms at the Hilton Orlando Lake Buena Vista - Disney Springs® Area but you must book your room by March 26 to get a discounted rate. Scholarships may be available to offset your hotel costs.
Rates range of $239-$299 depending on room size. Register with our partner, CDG block here.
Transportation and Parking
Uber offers UberFamily, featuring vehicles with car seats and booster seats for families, as well as wheelchair accessible vehicles (WAV). Visit www.uber.com for more information. The area has shuttle bus to the various Parks.
Family Scholarship Application - Due March 20
Thanks to our generous Event Sponsors and donors, we will are offering scholarships to those who require it. Scholarships are for families with a child diagnosed on a genetic report with KCNT1 disorders and have a financial need. Complete our application here.
Please Read our Refund and Conference Policies here.
Every gift makes a difference.
Your donation – no matter the size – helps families access life-changing information, support, and connections.
Together, we can build a stronger future for all patients and families impacted by KCNT1.