Registration for the 2026 TSSUS National Turner Syndrome Conference opens Mon, Feb 2, 2026.
We can't wait to see you all in Cary (Raleigh),
North Carolina, July 24-25, 2026!
Registration for the 2026 TSSUS National Turner Syndrome Conference opens Mon, Feb 2, 2026.
We can't wait to see you all in Cary (Raleigh),
North Carolina, July 24-25, 2026!
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.
Registration for the 2026 TSSUS National Turner Syndrome Conference opens Mon, Feb 2, 2026.
We can't wait to see you all in Cary (Raleigh),
North Carolina, July 24-25, 2026!
Check this page often for Schedule and other important Conference information.
Event Dates
July 23rd:
Pre-Conference: registration, research opportunities & first timer mini orientation.
July 24-25:
Conference!
See you there!
July 26th:
Post Conference: local outings opportunities (not TSSUS events)
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 TS event in the world, bringing together individuals with Turner syndrome and their families to:
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Discover! Tools, resources, and support to overcome challenges related to Turner syndrome.
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Learn aboutthe 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 confidently managing TS-related needs.
What to expect at the conference
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Opportunity to meet with Dr. Mooney for consultations Friday-Saturday
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Structured opportunities to meet other attendees and presenters
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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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Facilitated peer discussions about topics you care about
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Specialized programs for children ages 4-18
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Entertainment Friday and Saturday evenings
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V.I.P. Butterfly Society and Major Donor Reception (by invitation)
Fees and Registration
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TSSUS Member (11+ years old): $325
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TSSUS Member (4-10 years old ): $250
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Non-member (11+ years old): $375
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Non-member (4-10 years old: $300
On-site registration is limited to special circumstances, and children 3 and under
may attend with a parent at no cost.
Registration includes:
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Four meals:
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Lunch and dinner on Friday and Saturday (*children 11- 17 meals are the same price as adults)
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Breakfast is complimentary during your stay as a hotel guest with Embassy Suites
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Research opportunities
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Meet-and-greets
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Entertainment (Karaoke and Dance)
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Access to the conference app that includes downloadable handouts
Download the New Conference App
📱 Get Ready for the Conference App!
Once you register for the conference, you’ll receive access to the official conference app, your go-to hub for schedules, speakers, updates, and important conference info — all in one place.
In the meantime, you’re invited to download the Yapp app for free and get familiar with how it works. Think of it as a sneak peek before the fun begins! When conference access opens, everything will be right there waiting for you.
✨ Easy to use
✨ Free to download
✨ Designed to keep you connected before, during, and after the conference
Stay tuned — more details will be unlocked as we get closer!
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.
The hotel has an indoor pool and free shuttle service. All hotel rooms are equipped with a flat-screen TV with cable channels, air conditioning, and a desk. Selected rooms include a kitchenette with a fridge and microwave. All guests can enjoy a complimentary American breakfast.
Hotel Rates are based on the number of people staying in the room, plus 13.25% state & local tax and a $0.60 hotel fee.
$175.00 rate for 1-2 people
$185 rate for 3 people
$195 rate for 4 people
For reservations:
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 (for room keys and complimentary breakfast)
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A $194 deposit/charge to your credit card is required at the time of booking.
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Parking Charges: Parking is discounted to $ 5 per night for all guests and attendees. Guests and Attendees must register cars via the PMC Parking Website to avoid citation and use the Validation Code: ESR50
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Complimentary basic guestroom Wi-Fi
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Cutoff Date: Thursday, June 18, 2026
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Book your room by clicking RESERVATIONS below.
Hotel room rates are available July 18 – 29, 2026. 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, subject to availability.
Contact Us
Need help booking your flight or hotel?
Registrants who would like assistance with travel arrangements should complete the Contact Us form and select Travel & or Hotel to be connected with, Carol Crawford, our conference volunteer travel advisor.
Transportation (Complimentary Shuttle)
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 919-677-1840
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You can easily roll your luggage on board.
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Passengers flying Terminal 1, with Southwest and Spirit are dropped off and picked up at Zone 3.
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Passengers flying Terminal 2, with all other airlines are dropped off and picked up at Zone 7.
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Usually, the shuttle takes 7-10 minutes to get to the airport and 7-10 minutes to return to base. On times of heavy traffic or in cases where the driver has already left the airport, turnaround could take 20-40 minutes
Important Dates & Deadlines
June 18:
Cancel Registration Deadline*
July 24-25
See you there!
June 18:
Hotel Reduced Group Deadline
July 23
Research Day
* Should you need to cancel your registration, a 50% refund of your registration fee is available through June 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, fun activities, and snack time. They will be divided into 5-6 age groups depending on the number of youth that register.
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Group 1: 4-year-olds with TS and those without TS, aged 4-10 years old
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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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Group 6: 11-18 year-olds without TS
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.
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.
