Koolen-de Vries Syndrome Foundation

Patient Advocacy Summit

July 16-18, 2025

Chicago, Illinois, USA

Hilton Chicago/Oak Brook Hills:

Resort & Conference Center

3500 Midwest Road

Oak Brook, Illinois, USA 60523

Patient Advocacy Summit

From July 16-18, 2025, the KdVS Foundation will host a Summit for families in the KdVS community. Families will be able to attend a variety of educational sessions and KdVS community events.

Scientific Summit

On July 16, 2025, the KdVS Foundation will host an all-day Scientific Summit. This event is open to KdVS researchers who will join together to discuss current and future research, to network and to collaborate.

Hotel & Conference Center

The Hilton Chicago/Oak Brook Hills Resort & Conference Center has room blocks available for folks joining us at summit. Simply click, Book Your Room below and reserve your room at the KdVS preferred rate.

Sponsorship Information

Your support and partnership are vital to helping the KdVS Foundation achieve our mission. We are happy to customize packages for all donations, please contact Ashley at [email protected] for more information.

Printable Daily Schedules

Hover over each day and click the button to view the schedule for the day. These versions are printable for hands-on folks!!

Day one is for getting settled in. We’ll have registration open followed by our Summit kick-off Celebration!

Get ready! Day two is jam-packed with so many learning sessions and activities.

The fun continues through to our last day with even more information/education sessions and activities for caregivers and kool individuals.

Prefer to keep it digital?

Download the PheedLoop Go! App from GooglePlay or Apple Store for FREE and have access to your summit tickets, schedule etc.

PheedLoop Go! - Android

PheedLoop Go! - iPhone

Summit 2025 FAQs

We'll keep adding to this section, please be sure to check back to see if your questions are answered here.

Yes! Click the ‘Book Your Room’ button in the ‘Hotel & Conference Center’ section above to reserve your KdVSF preferred room rate

There are 2 major airports in Chicago. Chicago Midway International Airport is located on the southwest side of Chicago and it is not the closest airport to the summit. The second airport in Chicago is O’hare International Airport. O’Hare is located 16 miles from the summit venue and would be the most convenient airport to fly into.

The city of Chicago is approximately 20 miles from the summit venue. Without traffic, you can cruise to Chicago in less than 30 minutes. If you’re on the road during rush hour or any congestion, it can take 2 hours. The best public transportation option to get into the city would be the Metra train. The closest train stations to the summit venue would be Elmhurst or Villa Park. A quick 20-30 minute train ride will drop you at Ogilvie Station in Chicago. From there you can walk, cab, or bike to your city destinations.

The summit is near Oakbrook Center which is a large outdoor mall with stores, restaurants, a movie theatre, Pinstripes (bowling, bocce ball, etc.), and a large outdoor play area for children. Hours are from 10:00AM-9:00PM (or 6:00PM on Sundays).

Yes. One-on-one sessions are limited, but they can be purchased at anytime. If you change your mind and would like to add a one-on-one session, log back into your account to purchase.

No. However, we are asking all presenters to share their slides and will make them available after the Summit.