National Turner Syndrome Conference

The 2025 TSSUS National Turner Syndrome Conference

Check this page often for Schedule and other important Conference information.

Explore Portland, Oregon

Event Dates

July 17th:

Pre-Conference. Registration, participate in research & Healthy Heart project screenings, First-Timer Meet & Greet, Mini Orientation.

July 18-19:

Conference!

See you there!

July 20:

Post Conference. Special outings planned by individuals
(Hike with Dr. Silerbach

and more to come).

Highlights

Join Us at the Turner Syndrome Society Conference!

The 2025 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:

Learn the latest advances in research, treatments, and care.
Connect with an inspiring and supportive community.
Share experiences, stories, and strategies for managing TS-related needs confidently.
Defy Gravity! Overcome challenges related to TS.

What to expect at the conference

Opportunity to participate in the Healthy Heart Project and receive a free echocardiogram while supporting TS research
Meet and greets with attendees
Expert and peer-led presentations and workshops
Interactive Q&A sessions with medical professionals
Breakout groups for adults
Specialized programs for children ages 4-12 and teens 13-18
Entertainment for all
V.I.P. Butterfly Society and Major Donor Reception (by invitation)

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.

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:

Five meals: breakfast and lunch on Friday and breakfast, lunch, and dinner on Saturday (*children 11- 17 meals are the same price as adults)
The research day on Thursday
Meet-and-greets
Entertainment (Karaoke and Dance)
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.

Include the names of guests staying in your room to receive additional keys during check-in.
A $194 deposit/charge on your credit card is required when booking.
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.
Self-parking is $14.00 per vehicle for TSSUS guests, which is not reflected on the standard hotel website reservation page.
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.

Reservations

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:

MAX Light Rail runs every 20 minutes.
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
You can easily roll your luggage on board.
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 Group Deadline

July 17
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.

Kids 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 groups by age, typically grouped by those without TS ages 4-10 and 11-17, and those with TS ages 5-7, 8-10, 11-13, and 14-18. 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.