The 2025 TSSUS National Turner Syndrome Conference
The 2025 TSSUS National Turner Syndrome Conference
Check this page often for Schedule and other important Conference information.
The 2026 TSSUS National Turner Syndrome Conference
Check this page often for Schedule and other important Conference information.
Event Dates
July 23rd:
Pre-Conference. Registration, participate in research & First-Timer Meet & Greet, Mini Orientation.
July 24-25:
Conference!
See you there!
July 26th:
Post Conference. Special outings planned by individuals
Why Attend?
People say attending the conference is life-changing and everyone 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.
Highlights
Join Us at the Turner Syndrome Society Conference!
The 2026 TSSUS National Turner Syndrome Conference is the largest event in the world, bringing together individuals with Turner syndrome, their families, medical professionals, and researchers to:
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Learn the latest advances in research, treatments, and care.
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Connect with an inspiring and supportive community.
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Share experiences, stories, and strategies for managing TS-related needs confidently.
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Defy Gravity! Overcome challenges related to TS.
What to expect at the conference
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Opportunity to meet with Dr. Mooney for consultations Friday-Saturday
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Meet and greets with attendees
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Expert and peer-led presentations and workshops
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Interactive Q&A sessions with medical professionals
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Breakout groups for adults
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Specialized programs for children ages 4-12 and teens 13-18
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Entertainment for all
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V.I.P. Butterfly Society and Major Donor Reception (by invitation)
Fees and Registration
• Adult Member (11 & over): $325
• Non-Member: $375
• Child Member (10 & under): $250
• Non-Member: $300
On-site registration is limited to special circumstances
Registration includes:
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Six meals: breakfast, lunch, and dinner on Friday and 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.
Embassy Suites by Hilton Raleigh Durham Research Triangle
201 Harrison Oaks Boulevard, Cary, North Carolina 27513
The hotel is in the heart of Cary, just minutes from Research Triangle Park, premier dining and shopping, and Umstead State Park, with easy access to downtown Raleigh and the airport.
$175.00 - $195.00 rate for (1 to 4 people) plus 13.25% state & local tax + hotel fee of $0.60.
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 $5.00 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
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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 (Complimentary)
Free travel from the airport to the hotel (15 minutes) using the Embassy Suites Airport Shuttle.
Airport Shuttle: Pickup from the Raleigh-Durham International Airport
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Airport Shuttle runs every 30 minutes (on the hour and half hour).
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Call the hotel for pickup at 123.456.7890
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You can easily roll your luggage on board.
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designated pickup location??
Important Dates & Deadlines
May 18:
Cancel Registration Deadline*
July 24-25
See you there!
June 18:
Hotel Reduced Group Deadline
July 23
Research Day
including the popular Healthy Heart Project echocardiogram screenings by expert TS 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.
Youth Program
We are often asked, “What is the best age for me to bring my daughter?” This is a tricky question! Some kids adapt quickly, and others are anxious regardless of their age. If you feel your child is ready to join other children for the day and understand that they will see you at breakfast, lunch, and the end of the program day, then they will most likely enjoy themselves. We remember a pre-teen girl who begged her parents not to make her go to the group and even kicked Deborah when she tried to talk to her. The girl attended the kids’ group, and the next day, her parents said she had the best day of her life. We don’t expect kids to adapt that quickly, but we know they often make life-long friends. Even those without TS often can’t wait to see each other again.
The kids enjoy structured time for crafts, age-appropriate presentations, group discussion time, fun activities, and snack times. They will be divided into 6 age groups.
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Group 1: 4 year-olds and non-TS (4-10 yrs)
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Group 2: 5-7 year-olds with TS
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Group 3: 8-10 year olds with TS
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Group 4: 11-13 year olds with TS
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Group 5: 14-18 year olds with TS
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If your child wants to be in the same group as a friend, please call us to coordinate.
We do our best to support the needs of all registered children, but for safety purposes, children must be potty trained and able to follow basic directions. If necessary, a parent, grandparent, or another registered adult may join your child in the youth group.
Many youth group leaders have TS or friends and family members with TS. They are all qualified and trained to support the needs of children with TS. The 14–18-year-old group may discuss sensitive topics such as infertility and depression.
