TSSUS is the largest organization – worldwide – supporting the Turner syndrome community.
The Turner Syndrome Society of the United States: Advancing knowledge, facilitating research, and supporting all those touched by Turner syndrome.
Fees and Registration
Adult (*age 11 and over) members $325 and non-members: $375
Child (10 and under) Member $250; non-member: $300
On-site registration is limited to special circumstances
Registration includes:
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Five meals: breakfast and lunch on Friday and breakfast, lunch, and dinner on Saturday (*children 11- 17 meals are the same price as adults)
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The research day on Thursday
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Meet-and-greets
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Entertainment (Karaoke and Dance)
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Select recorded sessions will be available after the conference ends.
DoubleTree by Hilton Portland
1000 NE Multnomah St., Portland, OR 97232
The hotel is in the heart of Portland, one block from local attractions, and the local MAX Light Rail station is next door, linking to downtown Portland and the airport.
$169.00 rate for (1 to 4 people) plus 16.57% city tax.
Click on the blue numbers to edit the default hotel dates to choose the dates you want.
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Include the names of guests staying in your room to receive additional keys during check-in.
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A $194 deposit/charge on your credit card is required when booking.
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If you need a refrigerator for medication in your guest room, let the hotel know by filling in the Special Request option at the bottom of the reservation page.
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Self-parking is $14.00 per vehicle for TSSUS guests, which is not reflected on the standard hotel website reservation page.
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Complimentary basic guestroom Wi-Fi
Hotel room rates are available July 12 – 22, 2025. Guest rooms with the TSSUS group rate are subject to hotel availability at the time of the reservation. This means that if TSSUS reserved 150 guest rooms with two queen beds for Friday, our room block will be sold out once 150 queen rooms are reserved for Friday. If this occurs, please contact us, and we will investigate our options for adding additional rooms. Reservation requests received after the cut-off date will be accepted at the TSSUS rate based on availability.
Transportation
$3.00 to travel from the airport to the hotel (24 minutes) using the Portland TriMet tram, specifically the MAX “Redline”.
MAX “Redline” features:
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MAX Light Rail runs every 20 minutes.
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The day's first train arrives at PDX at 4:57 a.m. on weekdays and weekends. The last train departs PDX at 11:49 p.m. daily
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You can easily roll your luggage on board.
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The MAX station and ticket machines are located near the baggage claim on the lower level. If you take the MAX “Redline” to the hotel, here is a step-by-step guide from the Airport to the Hotel. When you want to go back to the Airport, just reverse these steps. Additional details are available at https://trimet.org/schedules/maxredline.htm
Important Dates & Deadlines
April 1:
Conference Scholarship Deadline
April 15:
Scholarship Recipients Notified
May 18:
Cancel Registration Deadline*
June 12:
Conference Registration Deadline
June 19:
Hotel Reduced GroupDeadline
July 17
Research Day
including the popular Healthy Heart Project echocardiogram screenings by expert TX sonographers.
* Should you need to cancel your registration, a 50% refund of your registration fee is available through May 18. Afterwards, cancellations are only available for rare instances.
Why Attend?
People say attending the conference is life-changing and should try to attend at least once. There is nothing like standing in a room with 500+ people who “get you.” They share your excitement and anxiety, want to learn from you, and hope you learn from them. A dad said, “We are impressed and relieved that the conference doesn’t feel like a corporate event because it’s so personable. We feel the care.”
Half the attendees are first-timers, so we host a first-timer meet and greet and mini orientation. There is an option to join the private conference Facebook group to meet other attendees, find a roommate or a travel buddy, or meet up as soon as you arrive. A 10-year-old shared, “At school, I have one or no friends, but at the conference, we’re all friends!” We hear the same from the golden butterflies over 55 years old; they meet new people and meet up with lifelong friends each year.
The presentations and discussion groups are outstanding. We have a core group of presenters who know some people need the basic information explained simply. They also know some of you are experts in your own right and seek advanced knowledge.
Our traveling volunteer team! Dr. Prakash (cardiologist) and Dr. Mooney (psychologist) are conference favorites and present yearly. TS expert specialists (often from TS clinics) present on other important topics. All presenters enjoy speaking to attendees throughout the weekend, during meals, in the hall, and at designated areas, and often offer individual consultation times. The point is that everyone supporting the conference cares about your needs before, during, and after the conference.
The Kids' program is divided into six groups, including four for school-age children with TS. We encourage the children to support and respect one another and learn skills while having fun. The kids enjoy structured time for crafts, age-appropriate presentations, group discussion time, fun activities, and snack times.
