Details of the event are still being determined. Please check this page or our social media regularly for updates.

White Sutton Together is a conference specifically for individuals who have been diagnosed with White-Sutton syndrome, as well as their families, caregivers, and researchers. The 2024 conference will be held in Orlando, Florida at the Rosen Centre on October 25th-27th. It will feature relevant speakers, networking opportunities and activities intended to foster scientific advancements, community-building and relationships. Meet other affected families, hear presentations from relevant medical professionals and members of the WHSUS community, directly participate in advancing WHSUS research, and build relationships during planned activities. Currently, we have 37 attendees registered – below is all the information you will need to become an attendee as well!


$25 $10




White Sutton Together Comes to the Rosen Centre

The White Sutton Together 2024 Conference will be held at the Rosen Centre in south-western Orlando, just minutes for Orlando International Airport, 20 minutes from Disney World and only 14 minute from Universal Studios.
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Rosen Centre

We have arranged a block of discounted rooms for attendees at the Rosen Center. You can book your lodgings using this link or by calling 1-800-204-7234 and mentioning that you’re part of the POGZ White Sutton Syndrome Foundation group during booking. The $132 rate we’ve negotiated is available from October 22nd-30th These rooms must be booked as soon as possible in order to secure this rate, since we only have a limited number of rooms reserved.

Traveling from Outside the US?

You can request a Visa Invitation Letter to support your visa application by emailing us once you’ve completed registration. The Visa Invitation Letter will be emailed after the requester has registered for this conference and the registration fee has been paid in full. Original Visa Invitation Letters cannot be mailed via Post/DHL/Airmail.

The White Sutton Syndrome Foundation has joined forces with the CHAMP1 Research Foundation to hold this event. CHAMP1 is closely associated with the POGZ gene that researchers believe is responsible for White-Sutton Syndrome. There will be sessions and events held in conjunction with CHAMP1 that White Sutton Together attendees will also have access to. The CHAMP1 Research Foundation has been pivotal in organizing this event and we thank them for their help and support!