top of page
Image by Luca Micheli

Cure KCNH1 Family and Professional Conference 2026

September 25-27, 2026  |   Paris, France

Paris Marriott Rive Gauche

Bridge with Gargoyles

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.*

Image by Timelab

STAY TUNED

Check back here for more updates

Page last updated: June 26

Contact Us

info@curekcnh1.org
619-742-0013

  • Instagram
  • Facebook
  • Twitter
  • LinkedIn
  • YouTube

We're always looking for support for our mission. 
Let's connect!

CURE KCNH1 FOUNDATION is a registered nonprofit organization, EIN# 87-2041980

bottom of page