
Cure KCNH1 Family and Professional Conference 2026
September 25-27, 2026 | Paris, France
Paris Marriott Rive Gauche

Join us for our first in-person conference featuring expert-led sessions, registry insights, and meaningful community connection.
The 2026 KCNH1 Family & Professional Conference is hosted by Cure KCNH1 Foundation and provides a unique opportunity for patients and families, scientists and doctors, and industry partners to come together to learn, connect, and share experiences and strategies to enhance the lives of those affected by KCNH1-Related Disorders.
Conference Agenda
Time
9:00 AM
9:10AM
10:30AM
11:15 AM
12:00PM
1:00PM
1:30PM
2:30PM
3:00PM
7:00PM
Event
Welcome/Opening Remarks
Michaelle Jinnette
Introduction to Genetics and Treatment Approaches for KCNH1
Ali Rosenberg
Fundraising for KCNH1 Research
Breanne Dollar
"Birds of a Feather" Breakout Groups
Language/Age-based Discussion Groups
Lunch
Q&A with KCNH1 Dad and Neurologist
Price Tipping
Registry Results and Next Steps
Malin Zaddach and Leonie Nicolai
Research Participation Opportunity
Cure KCNH1 Team
Community-Building Activity
Neighborhood Scavenger Hunt
Community Dinner
Agenda subject to change
Paris Marriott Rive Gauche Hotel & Conference Center
Address: 17 Bd Saint-Jacques, 75014 Paris, France
Hotel Website: Click here
Hotel room check-in 3 PM | Hotel room check-out 12 PM noon
Room Block Nightly Rate: €249 + city taxes (base rate for single occupant; additional charges for additional guests, and family suites)
We've arranged a special group rate at the conference hotel. The rate is for the nights of Friday September 25th and Saturday September 26th, but if you plan to come earlier or leave later, the discounted rate is available up to 3 days before or after, depending on availability.
*Rooms at the group rate are limited - we encourage you to book within the early bird registration period. Rooms booked with the group discount are only refundable up to 45 days before the start of your stay.*

