2024

Glut1 Deficiency Summit

We are already excited about our next biennial gathering of the entire stakeholder community at our Glut1 Deficiency Summit! We have special sessions planned to build relationships, foster collaborations, and create community while focusing on how to better meet the needs of patients and families.

The goals of our gathering:

improve patient care
support, connect, and empower the patient and family community
give patients a voice in the research process
share key research updates
identify critical gaps and strategies to address them
foster collaborations across related research areas
attract and inspire new researchers and disease specialists
engage all stakeholder groups to drive research progress

scientific

JUNE 26-27

We will gather the scientific community to hear the latest updates in research and therapy development and provide opportunities to deepen collaborations and develop new ones.

The first day will begin with lunch and afternoon lightning talk sessions across a broad range of collaborative partners. The second day will feature a full day of presentations.

clinical

JUNE 28

The clinical sessions will feature opportunities to learn more about symptoms and best practices in clinical care from expert neurologists and dietitians.

These sessions are ideal for patients, families, clinicians, and anyone wanting to understand the patient experience better and how to provide the best care for diagnosis and disease management.

family

JUNE 29

The family sessions will feature information and resources to help patients and families navigate the challenges of this disease across a number of topics as well as provide opportunities to strengthen connection and support across the community.

These sessions are ideal for patients, parents and caregivers, siblings, friends, and extended family members.

Conference Details:

Registration will be separate for each day of the Summit so attendees can customize their experience.
The focus will be different each day, but all stakeholders are welcomed and encouraged to attend all sessions of interest.
A welcome social will be held on Thursday evening, June 27th for all attendees.
Registration is now open and will close on June 12, 2024.

Conference Venue and Guest Room Reservations:

The Omni in downtown Dallas will be the venue for the Glut1 Deficiency Summit
We've secured a room block with a discounted daily room rate of $239 plus tax
A number of additional hotel discounts will be available to Summit guests, including parking and the on-site spa
Hotel guest room reservation instructions will be provided in the registration confirmation receipt
Room reservations and rates are available on a first-come, first served basis until May 11th at 5:00 PM Central or until the room block is sold out, whichever comes first. After that date, reservation requests will be based on the hotel's prevailing rate.
We kindly request that all conference attendees who need overnight accommodations to book rooms at the Omni through the special instructions - this helps us meet our contract obligations, keeps registration and hotel prices lower, and helps you as an attendee get the most out of the conference experience.
You’ll get further directions on how to make room reservations at the discount rate in your Summit registration confirmation receipt. Not sharing that information publicly on our website helps protect from scammers who find the discounted rates and take our rooms.

Activity Rooms:

Activity rooms will be available for use during the Clinical and Family Sessions (Friday and Saturday) for those who will not be attending presentations
These rooms will have arts & crafts, games, puzzles, and other activities available
Invited guests will be providing entertainment and special activities
Staff will be available to monitor the room but no supervision will be provided
Attendees who use these activity rooms should plan to provide their own supervision (see Child Care Provider registration option)
One activity space will be a dedicated Family Room with live streaming of presentations so that those who do not have child care can watch and not worry about disturbing others

Research Participation Opportunities:

A number of on-site research opportunities will be available for patients during the Summit
These studies are designed to help provide important insights that will potentially lead to better and easier diagnosis and treatments
Learn more by downloading this flyer from the team
Dr. Juan Pascual and his UT Southwestern/Weill Cornell team will conduct the IRB-approved studies during the Summit
Please reach out to the study team to learn more and sign up: [email protected]