NFXF International Fragile X Conference

The NFXF International Fragile X Conference is the largest of its kind in the world. This biennial event brings professionals, caregivers, self-advocates, and family members together—a truly unique experience for a community all-too-familiar with the question: Fragile what? In addition to providing the opportunity for friendship and solidarity, sessions focus on strategies and techniques for living with Fragile X, as well as providing access to emerging research and opportunities.

17th NFXF International Fragile X Conference
3-Event Virtual Series

MAY 29-30 | JUNE 27 | JULY 22

Parents, treatment professionals, clinicians, and researchers — the NFXF is committed to delivering timely, valuable educational content from highly regarded Fragile X experts. Our goal this summer is to create significant learning opportunities along with the social interactions enjoyed by so many.

We held our first of three conference events — Fragile X Syndrome Across the Lifespan — LIVE Saturday and Sunday, May 29–30, and it was amazing! Current registrants have on-demand access to all of the May event sessions (and June and July as they become available) through the end of 2020. And new registrants can register at any time for full access to all previous event sessions on-demand, plus upcoming events as they become available. Jump down to our registration info below to learn more!

Virtual Series Details

During live sessions, discussions, and Q&As, you’ll be able to post questions to the presenters. Additionally, you’ll have opportunities to meet one-on-one virtually with other attendees and during group breakouts. Check out each of the three events in the series:

EVENT 1 Fragile X Syndrome Across the Lifespan — May 29–30

Our May event has ended (view agenda). See upcoming events for June and July below.

Our first two days (May 29–30) focused on living with and caring for individuals with Fragile X syndrome. Session speakers included Fragile X experts and medical providers, caregivers, parents, and self-advocates during six live speaker-led sessions with Q&A, five live panel discussions with Q&A, and over 25 pre-recorded sessions.

EVENT 2 Premutation Carrier Issues — June 27

Our third day (second event), Saturday, June 27, will feature live speaker-led sessions and panel discussions plus Q&A, and over 10 on-demand sessions looking at Fragile X premutation carrier issues, including caring for yourself, Fragile X-associated tremor/ataxia syndrome, and Fragile X-associated primary ovarian insufficiency.
To register, see below.

VIEW AGENDA VIEW SPEAKERS

EVENT 3 Fragile X Research Roundup — July 22

On our final day, Wednesday, July 22, we will hear from those researching Fragile X. Presenters ranged from basic scientists to those conducting clinical trials for treatments. It will include live sessions with Q&A from top researchers on the hottest research topics in Fragile X plus more than 30 on-demand sessions about recently completed or ongoing studies. You’ll want to participate live, but like all of our sessions they’ll be available on-demand through the end of 2020.
To register, see below.

Registration

PRICING BASED ON YOUR SITUATION

The financial impacts of the global health crisis are varied and widespread. That’s why we’re offering you the ability to choose your price for this valuable educational series.

All levels of registration provide access to:

  • Virtual sessions (live and recorded)
  • Live Q&A’s with presenters
  • Connecting virtually to other families, professionals, and sponsors
  • EVERY presentation (48 hours of content) slides, articles, and recordings through the end of 2020

CHAMPION $349

If you are able to help others in the Fragile X community, please consider being an educational champion. This option will cover the basic costs of delivering these learning opportunities to you, provide support to those who need it, as well as help ensure that the NFXF is here to deliver future educational opportunities to the community.  

SUSTAIN $249

If you are sustaining yourself during this very difficult time, please consider this option to pay for the basic costs of delivering these learning opportunities to you.

SUPPORT $179

If your finances have been significantly impacted during this unprecedented time, feel free to select this option. We’re here to support you!

17th NFXF International Fragile X Conference Virtual Series

Code of Conduct | PDF Download

The 17th NFXF International Fragile X Conference Virtual Series is being presented in the spirit of collaboration, productivity, and respect. We endeavor for the NFXF Conference to be a positive experience for all attendees and will not tolerate inappropriate behavior in any form. NFXF values the diversity of views, expertise, and experiences reflected among its community members, and is committed to providing a safe, productive, and welcoming environment for all.

At an NFXF event, you agree to:

  • Respect the boundaries and confidentiality requests of speakers and other attendees.
  • Be mindful of your fellow participants.
  • Respect the rules and policies of the meeting venue.

These behaviors are inappropriate and will not be tolerated at an NFXF event:

  • Aggression, harassment, intimidation, or discrimination in any form.
  • Deliberately being disruptive or threatening anyone.
  • Sexual harassment or verbal abuse of any kind.
  • Use of sexual, vulgar, or discriminatory images in presentations or in comments contributed while participating.

Reporting Unacceptable Behavior: If, during an NFXF event, you experience or witness an incident that violates the Code of Conduct, please let an NFXF team member know immediately by contacting conference@fragilex.org.

NFXF Commitment: The Code of Conduct applies to all attendees and participants. NFXF will investigate all incidents reported at an event with discretion and confidentiality. NFXF reserves the right to ban any person who violates our Code of Conduct from attending an NFXF event in its entirety or in part, and/or to cancel the event registration of the person without refund.

May 2020

REGISTER NOW
DONATE TO SUPPORT EDUCATION

Why Attend

VIRTUALLY COUNTLESS OPPORTUNITIES

With the help of a state-of-the-art mobile and web application designed specifically for virtual conferences, as an attendee you will:

Sponsorship Opportunities

INTERESTED IN BECOMING A SPONSOR?

Sponsors have the unique opportunity to access and connect with an enthusiastic audience including:

Conference presentations include both live and recorded sessions (available to download and access until year-end), social interactions, and unique learning opportunities, with timely and valuable educational content presented by highly-regarded experts in their fields. Be a part of something great!

  • Individuals living with Fragile X
  • Family members
  • Basic scientists
  • Clinical researchers
  • Physicians
  • Health care professionals
  • Service providers
  • Government officials
  • Pharmaceutical industry representatives
  • Educators
  • Other stakeholders interested in progress being made in the Fragile X field
SPONSOR INFO + APPLICATION
CONTACT KRISTIN
Online conference call with individual attendees

   REGISTER

Haven’t registered yet? No matter when you register, you’ll have on-demand access to all previous sessions plus upcoming sessions as they’re available (throughout 2020).

REGISTER NOW

   QUESTIONS?

Email us with your general questions and we’ll get back to you as quickly as we can.

ASK US A QUESTION

   MEET OUR 2020 SPONSORS

Can you help make this information available to more families and researchers by becoming a sponsor?

SPONSOR INFO + APPLICATION
KRISTIN BOGART
Zynerba Pharmaceuticals conference sponsor logo display
Tetra Therapeutics 17th NFXF International Fragile X Conference sponsor logo
Ovid Therapeutics, Bold Medicine, 17th NFXF International Fragile X Conference sponsor logo
Asuragen 17th NFXF International Fragile X Conference sponsor logo

Conference FAQs

Everyone! We have family-friendly sessions that will educate parents, caregivers, teachers, researchers, medical providers, and self-advocates. All are welcome to all sessions.

On-demand means you can view the presentation whenever it is most convenient for you.

On-demand sessions are placed in a time slot on the agenda due to the software, but they can be watched at any time after the start of each event and are available through 2020 exclusively for registered attendees.

Live sessions will be recorded and available as on-demand approximately one week after each of the three live events.

Live sessions will occur live at the time posted on our agenda. Live sessions give registered attendees the opportunity to participate in live Q&As with the presenter.

All live sessions will be recorded, and a link to the on-demand recording will be added to the agenda approximately one week after each of the three Virtual Series events. A registered attendee, you can return to the conference web or mobile app to view them anytime in 2020.

The recordings and handouts will be available to registered attendees through 2020.

There is a Q&A option on the mobile and web apps. Please note, we’ll do our best to ensure your questions are answered during the event.

We are thankful to our presenters who will work hard to answer your questions during the conference, however we can’t guarantee answers to all questions, especially after each of the three virtual series conclude. Please reach out to us at conference@fragilex.org with any questions, and we’ll help you find the answers you need.

The message feature lets you send a private chat message to another attendee or one of the speakers. Speakers can only respond to messages they’ve received on or before the day of their session. Messages sent after will not be answered. If you’re not able to reach someone with your question, please reach out to us at conference@fragilex.org and we’ll help find the answers you need.

We are using an application called Whova, and you’ll be able to view the conference — including agendas, speaker bios, bonus materials, and on-demand videos — on a laptop or desktop computer web browser, or on a smartphone or tablet using the Whova mobile app.

Registered attendees will receive access information approximately one week prior to the May 29 opening day so you can get oriented before the event begins, or you can download the mobile app now (full access and live events for the first series begin May 29).

We’ll be adding more information about using the app as we get closer to May 29.

YES!! You can register at any time in 2020 and will have access to all sessions, live and on-demand. The content is available throughout 2020.

However, we encourage you to participate in the live events to interact with the speakers and other attendees in real time. Even though it isn’t in-person, meeting others in a similar life journey, or connecting with other providers and researchers will be a valuable experience for everyone.

You may share registration access within a household (on one device at a time) 

Please note that your registration fees permit shared access within the same household to the conference events on one device at a time – phone, tablet, laptop, desktop, or Smart TV. Sharing your access with unregistered users will result in the cancellation of your own registration fee without a refund. 

You can send us an email using the button below, or call us at (800) 688-8765 (9–5 M–F Eastern).

ASK US A QUESTION

Yes!

Registration Fees: Your registration fee will be refunded with no penalty. Please email Jen Barber directly at jen@fragilex.org.

Hotel: Hotel rooms booked under the Renaissance Orlando at SeaWorld conference rate are fully refundable. Please see your original confirmation for details, or check the hotel’s information page regarding cancellation policies.

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