19th NFXF International Fragile X Conference

The NFXF International Fragile X Conference is the premier educational event for the Fragile X community. This biennial event brings individuals with Fragile X and their families, caregivers, friends, and professionals together to learn from one another and celebrate Fragile X. This unique experience is not only educational but also empowering.

Join Us July 25–28, 2024, in Orlando!

The 19th NFXF International Fragile X Conference is July 25–28, 2024, at the Renaissance Sea World in Orlando. Conference sessions focus on strategies and techniques for living with all the Fragile X-associated conditions, information about emerging research and treatments, and opportunities to build community through storytelling. Join us!


40th Anniversary conference logoTo celebrate our 40th anniversary we dropped ticket prices! Continue reading to learn more about registration, childcare during the conference, and more.

Early bird pricing is available now through April 30, 2024, so sign up early! See pricing and a list of what’s included for on-site vs. virtual attendance below the pricing table.

Early Bird
Individuals (18+) $249 $279 $309
Self-Advocate (13+ full mutation*) $149 $179 $209
Sibling (13-17) $149 $179 $209
(e.g., industry, government, physician, treatment, educator)
$299 $329 $359
Virtual Only $199 $229 $259

*Who is a Self Advocate? A self-advocate has Fragile X syndrome, is at least 13 years old, and plans to attend Self-Advocate sessions. All minors (ages 13-17) and self-advocates ages 18+ with behavioral support needs must be accompanied by a registered parent, caregiver, or legally authorized representative throughout the conference. See more about self-advocates in the FAQ below.

What’s Included for On-Site & Virtual Attendance On-Site Attendance Virtual Attendance
Keynotes ✓ Live stream
Industry Updates ✓ Live stream
Panel Sessions ✓ Live stream
Self-Advocate Sessions: Topics, activities, and strategies to educate and empower self-advocates, encourage connections with other self-advocates and their caregivers, and learn meaningful strategies and skills to implement at home, school, work, and community.  Sessions may be interactive including movement, hands-on activities, music, and talking.
Breakout Sessions Recording only
Kickoff Reception (Thursday)
Poster Presentations (Friday) Recording only
Saturday Celebration
Access to Recordings Post-Conference: Keynotes, Industry Updates, Poster Presentations, and Panel and Breakout Sessions

*Live streams and recordings will be available on the Whova app. Instructions will be provided. Recordings will be available within two weeks after the conference. There will not be any opportunity for virtual attendees to interact with presenters for recorded sessions. Self-Advocate sessions will not be live streamed or recorded. 



Only registered attendees may attend sessions so it’s highly recommended to enroll children ages 2-12 in childcare.

We have arranged for a more than 50% reduced rate with KiddieCorp, and your cost will be $100 per day. In addition, all children enrolled for 16 hours or more will receive a complimentary ticket to the Saturday Celebration.

Read the KiddieCorp Health and Safety Measures. The advanced registration deadline is May 24, 2024.



Scholarship applications are now closed.

Important Dates

  • Scholarship recipients will be notified by email by April 1, 2024
  • Recipients must confirm acceptance of the scholarship by April 8, 2024
  • Scholarship recipients must register for the conference by April 30, 2024

Thank you to our Community Support Network chapters and community partners, supporters, and private donors, for making these scholarships available.


The 2024 conference will be held at Renaissance SeaWorld in Orlando. The hotel is about 18 minutes from Orlando International Airport (MCO). We recommend using a ride-share app or getting a rental car. We have a discounted rate for parking at the hotel.

Please do not reserve more rooms than you anticipate needing. The negotiated room rate is available until the room block is sold out, or on Monday, July 1, 2024. Whichever comes first.


Speakers & Agenda

Please Note: The submission deadline for speakers has passed. Please email conference@fragilex.org with any questions.

Meet-ups, panel sessions, and networking opportunities will be integrated throughout the conference. We will update the agenda between now and the conference as schedules are confirmed. Please note times are estimates and subject to change.

Main topics include:

9 am–
12 pm

Conference sessions


Conference sessions

12 pm–
5 pm
Family-to-family sessions

First-time attendee session

Conference sessions

Industry updates

Conference sessions
5 pm–
8 pm
Conference kick-off Poster session Celebration!

Conference topics may include:

  • Young Children
  • School-Age Children
  • Transitioning
  • Adults (e.g., housing, employment)
  • Females
  • Development & Behavior
  • Education
  • Medications & Treatments
  • Family-Friendly Basic, Clinical & Translational Research
  • Estate Planning
  • Fragile X–Associated Primary Ovarian Insufficiency (FXPOI)
  • Fragile X–Associated Tremor/Ataxia Syndrome (FXTAS)
  • Other Premutation–Associated Disorders
  • Caregiving
  • General Health Considerations & Strategies
  • Reproductive Health & Options
  • Medications & Treatments
  • Family-Friendly Basic, Clinical & Translational Research
  • Combined and separate sibling and self-advocate content will be provided.
    • Being a Sibling
    • Self-Advocate Success Stories
    • Employment Resources
    • Social Interactions (e.g., friends, romantic relationships)
    • Coping with Anxiety
    • Healthy Lifestyle Choices
    • Reproductive Health & Options

Conference FAQs

Self-Advocate sessions are not monitored. The presentation style and physical and sensory demands (including noise and level of interaction,  participation, and movement) may vary with each session and presenter. Presenters are only responsible for facilitating the content and activity of the session.

It is the sole responsibility of the accompanying registered attendee (parent, caregiver, or legally authorized representative) to recognize and provide ALL support needs for the self-advocate while in the sessions and throughout the conference space.

As a parent, caregiver, or legally authorized representative to a self-advocate, you are required to be on the conference property at all times during the self-advocate sessions and conference events.

We are committed to providing an inclusive and safe environment for all attendees. Should the demands of any session or event exceed the coping strategies or abilities of a participant or the safety of the individual or other attendees be at risk, the NFXF reserves the right to request the attendee leave the session and/or conference space to calm down.

Conference locations are chosen years in advance through a competitive proposal process. Our partner helps us select sites that are best suited for the Fragile X community. We will continue to move the conference around the country to manage overall costs.

The NFXF is a bipartisan organization in all things we do.

We will have heavy appetizers on Thursday and Friday evening. We will have a full meal at the Saturday evening celebration (a ticket to the Saturday evening celebration is included with the individual registration and additional add-on tickets will be available for purchase for non-conference attendees). You are responsible for all other meals. There are a few options within the hotel itself, including a daily discounted soup & salad lunch and a dinner option. Water stations can be found throughout the hotel and in all meeting rooms.

Yes, please see the following for social events and other opportunities:

Thursday, July 25

  • Kick-off Reception

Friday, July 26

  • Poster Presentation Session
  • Informal lunch-break meet-ups*

Saturday, July 27

  • Informal lunch-break meet-ups*
  • Saturday Celebration: Entrance to this ticketed event is included with attendee registration. Additional tickets will be available for purchase for non-registered attendees.

Conference Sessions: Conference rooms will be organized by theme or topic for attendees to connect with others. These will be informal and will not be facilitated.

*Create Your Own: Registered attendees will also have the option to create their own meet-ups via the event mobile app, Whova. A link will be provided once available.

There are two nearby airports, with Orlando International Airport (MCO) being the closest. Both are listed here:

Orlando International Airport (MCO)
1 Jeff Fuqua Blvd.
Orlando, FL 32827

  • Distance from the hotel: 13 Miles
  • Phone: +1 407-825-2001

*Please note: Due to the popularity of MCO, their website recommends arriving a minimum of three hours before flight departure.

Orlando Sanford International Airport (SFB)
1200 Red Cleveland Blvd.
Sanford, FL 32773

  • Distance from the hotel: 41 Miles
  • Phone: +1 407-585-4500


Airport Website Transportation Links


  • Local Shuttle: The hotel offers a shuttle that is included for guests who elect to add on the optional resort fee of $20 per night.
  • Ride-Share: Uber or Lyft
  • I-RIDE Trolley: Exclusive, convenient, and affordable transportation to hundreds of exciting Orlando destinations within the International Drive Resort Area.

Yes, on-site self-parking at the hotel is $18 per day, with a 50% discounted rate for all guests attending the conference.

There are a few reasons to stay at the hotel selected for the conference:

  • Room Rates: We negotiate the best possible room rate by contracting for a block of rooms. Typical room rates would be significantly higher at the same hotel without this advantage.
  • Extend Your Stay: The special rate is available before and after the conference dates. The room block is available from July 21-July 29, 2024, which allows you to make a special vacation out of the conference at significant savings.
  • Hotel Staff: The hotel staff are briefed on Fragile X and are prepared on how to best support the needs of you and your family.
  • Networking: Staying at the Renaissance Sea World in Orlando provides numerous opportunities to network with other attendees, including professionals, caregivers, parents, and self-advocates.
  • Convenience: You don’t have to worry about getting to sessions on time, taking a quick break between sessions, or looking for a parking space when you stay at the Renaissance Sea World in Orlando.


Yes! We have partnered with our sponsor, Me and The Mouse Travel Agency, who can assist with planning your family vacation to all of the Orlando area destinations. You may contact them at fragilex@meandthemouse.com.

YES!! This is a family-friendly event. Non-registered family members are welcome to enjoy the hotel amenities and the many iconic Orlando attractions.

However, due to space limitations and our commitment to the health and safety of all registered attendees, ONLY registered attendees (including children and adults) are permitted in the conference space and sessions.

Saturday Evening Celebration: Each registration will cover one entry to the Saturday Celebration, but you can purchase additional tickets for non-registered family members during the registration process.


19th NFXF International Fragile X Conference Orlando Florida


July 25–28, 2024

Early Bird Registration
Now through April 30, 2024.

Childcare Registration Deadline
May 24, 2024


Early Bird Registration is now open!



KiddieCorp registration is now open. Deadline is May 24, 2024.



Renaissance SeaWorld in Orlando reservations are now open.



Harmony Biosciences logo
Tetra Therapeutics / Shionogi logo
Kaerus Bioscience logo
National Down Syndrome Society (NDSS) logo
Fragile X Clinical and Research Consortium logo
FORWARD-MARCH Multiple Assessments for Research Characterization logo
International Fragile X Premutation Registry logo
John's Crazy Socks logo
NFXF Greater Chicago Chapter
NFXF Heartland Chapter
NFXF Houston Chapter
NFXF Sibling & Self Advocate Network
Me and the Mouse Travel logo
NFXF Southeast Pennsylvania Chapter
NFXF Greater NYC Chapter
Fragile X Alliance of Texas - San Antonio logo
Suburban Research Associates logo
Fragile X Association of Southern California
Fragile X Association of New York logo
NFXF Kansas Chapter
NFXF Connecticut Chapter
Wawa Foundation logo


40th Anniversary conference logo

Peggy and Mike Flanigan
Ilana Garber
Marcia and Denny Haugen
Standard Insurance Company

Become a 40th Anniversary Sponsor!

Sign up for conference updates