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.

Register now!

Conference Agenda*

Friday,
September 25

5 - 7pm

Family Registration & Welcome Mixer

Join us for a meet and greet reception upon arrival in Paris! Enjoy refreshments, complete your registration, and pick up your conference packet while you reconnect with familiar faces and meet families from around the world. A relaxed evening to kick off the weekend together.

Saturday,
September 26

9am - 8pm

Family Day

Saturday will begin with patient education sessions in the morning, followed by time to connect as a community in the afternoon. A separate Family Room with activities has been reserved for families. The day includes a group lunch and group dinner. More details to come.

Sunday,
September 27

8am - 12:30pm
Scientific Symposium

12:30 - 2pm
Patient/Professional Lunch

2 - 4pm
Research Roundtable

Scientific Symposium & Research Roundtable

Sunday morning features a KCNH1-focused scientific symposium with talks from international KCNH1 experts including Drs. Luis Pardo, Al George, Malin Zaddach, Jennifer Kearney, Matthew Weston, Evangelos Kiskinis, Agnès Bloch-Zupan, and more. Speakers will present new information about KCNH1 disease models, mechanisms, and therapeutic advances. Detailed agenda is coming soon. Space is limited, so please register early! This session is open to researchers, clinicians, and parents/caregivers, and will be followed by a group lunch for all attendees.

The afternoon research roundtable is open to researchers and clinicians, who will identify gaps in our understanding of KCNH1-related disorders and current therapeutic approaches, and discuss plans to address these needs.

*Please Note: This is a tentative schedule and is subject to change. Check back regularly for updates as we finalize our speakers and sessions!

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

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.*

We know that travel and conference expenses can be a significant barrier, and we don't want financial constraints to prevent families from joining us in Paris. A limited number of needs-based stipends are available.

To be considered, please complete the Travel and Registration Assistance Request Form below. Because funding is limited, assistance will be awarded on a first-come-first-served basis, and submitting a request does not guarantee an award.

Complete Form

Welcome to the 14th Arrondissement! While you're here for the conference, we encourage you to step outside and experience the local flair of our Left Bank neighborhood. Whether you have 20 minutes between sessions or a free evening, there is plenty to explore right outside our doors.

Neighborhood Highlights

The Paris Catacombs (7-minute walk): One of Paris's most famous (and eerie) historical sites is located just down the street at Place Denfert-Rochereau. Tip: You must book tickets weeks in advance.
Parc Montsouris (12-minute walk): Need a breath of fresh air or a scenic morning jog? This beautiful, sprawling 19th-century English landscape park features a lake, winding paths, and beautiful statues.
Rue Daguerre (10-minute walk): A vibrant, permanent pedestrian market street filled with classic Parisian cheese shops, bakeries, cafes, and fruit stands. It’s the perfect spot for an authentic lunch or afternoon espresso.
Luxembourg Gardens (10-minute metro/taxi): Just a short distance north, you’ll find these world-famous royal gardens—perfect for relaxing in one of the iconic green chairs. [Link to Luxembourg Gardens Info]

Getting Around the City

Paris has one of the best public transit networks in the world. The Marriott Rive Gauche is incredibly well-connected:

Metro Station: Glacière (Line 6) is just a 4-minute walk from the hotel. Line 6 is elevated for much of its route, offering beautiful views of the city (and the Eiffel Tower!).
RER Train Station: Denfert-Rochereau (Line B) is an 8-minute walk away. This line connects you directly to Paris-Orly Airport (ORY) and Charles de Gaulle Airport (CDG), as well as central hubs like Châtelet.
Navigation App: We highly recommend downloading Bonjour RATP (the official transit app) or using Google Maps to easily navigate transit routes and buy digital tickets.

STAY TUNED

Check back here for more updates

Page last updated: June 26