Patient Advocacy Summit

Join the Koolen-de Vries Syndrome Foundation on July 19-21, 2023

Registration EXTENDED until July 7!

Summit Registration

REGISTRATION IS OPEN! It is imperative that you read over the Registration Guide. Click below to download the guide. After reading through the information and instructions, you will find links to register and purchase tickets.

Hotel Resort

Hotel accommodations will be available at the Seaworld Resort Renaissance Hotel. A block of hotel rooms will be reserved at a special rate for attendees!

Disney Planning with Special Needs

Disney publishes a resource for guests with cognitive disablities including Austism Spectrum Disorder (ASD) to assist them in making plans to visit Walt Disney World.  Download guide below.

Summit Refund Request

If you wish to request a refund for your Summit Ticket, please click on link below.

Child Care

Childcare options are available during conference sessions. There is a fee associated with childcare and there are a limited number of spots. Children are not allowed in the sessions so please read over the FAQ.

Theme Park & Activity FAQ!

Read about theme parks, area activities and helpful hints about visiting Disney.

The Summit is on Facebook!

To stay up to date on the Summit, follow the Summit Facebook page!


Interested in a Summit t-shirt? Looking for a new KdVS shirt? Proceeds from sales of these items will be used to support the Summit.


We are looking for sponsors! Please download and share our Sponsorship Package. If you know of someone interested in sponsoring, please contact Ashley.


We will open the room block on September 27th. The rooms are large and most rooms have two queen beds. You may request a king room with a sleeper pullout couch, adjoining rooms or suites.

The basic room rate is $144 (plus taxes) per night, plus $20 (plus taxes) per room per night resort fee. Normally the resort fee is $40, KdVSF PAS attendees receive a 50% discount, along with these additional perks: 

  • Daily Scheduled Shuttle Service to: Magic Kingdom, Hollywood Studios, Epcot, Animal Kingdom, Disney Springs, Universal Studios. Please confirm your shuttle time with the front desk at check-in.
  • Daily Enhanced Wireless Internet In Guest Room
  • Resort Beverage of two coupons per room, per stay (Beer/Wine)
  • Daily Basic Wireless Internet In Convention & Meeting Space.

Find out more about The Renaissance Orlando at Seaworld Resort HERE

No, you are able to secure your own lodging if you choose. You will still be required to complete the event registration, available in early 2023.

Yes, the hotel does offer parking. KdVSF PAS attendees receive 50% off current rates for self-parking during the event. Please inquire about current rates directly from the hotel.

Absolutely! The KdVSF PAS room rate is in effect for July 16 through July 25. Feel free to extend your trip when you book through the link.

Yes! If you have questions about redeeming your points to make your reservation, please contact the hotel directly.

We are working on this and hope to share more information soon! 🙂 Join the KdVSF PAS Facebook group for all of the latest announcements and updates.

Yes, we plan to offer childcare (for a fee)  from a licensed provider during presentations so everyone can focus and listen. Childcare will be located on site, in a nearby conference room. Attendees can utilize family members as childcare providers if desired. The majority of sessions will be open to adults only, so please plan accordingly. Join the KdVSF PAS Facebook group for more information.

The hotel does not provide airport shuttle service. Please see this link for additional information on transportation.

Hotel guests enjoy an on-site waterpark, spa, restaurants, and MORE.

We hope to open registration in early 2023. Join the KdVSF PAS Facebook Group for u- to-date information. Registration includes attendance to presentations, a welcome reception on Wednesday evening, lunch on Thursday, lunch on Friday, and also the Kool Celebration Banquet on Friday evening. All attendees (parents, grandparents, siblings, etc.) must register. Individuals diagnosed with KdVS may attend free of charge.

The total cost of the KdVSF PAS is over $175,000. To help defray the costs, the KdVSF charges attendee registration fees and also solicits grants and donations from individuals and corporations.  If you or your company would like to sponsor a portion of the Summit to lower the costs to all parties, please contact Ashley Point at [email protected].

Registration costs coming soon.

You can reach out to Emily ([email protected]) and Jess ([email protected]), KDVSF PAS Committee Co-Chairs.