2023 Family Conference

2023 conference logo

12th International NBIA Disorders Association Family Conference

Houston, nicknamed Space City for being home to NASA’s Johnson Space Center, will host the 12th International NBIA Disorders Association Family Conference May 18 to 21, 2023.

The nation’s fourth largest city, Houston is the biggest city to ever host our family conference. It will be at the Hilton Houston Post Oak by the Galleria, 2001 Post Oak Blvd. The hotel is nicely situated, with easy access to airports, shopping and restaurants.

Hotel reservations are now open for our families to be reunited in person for the first time since the pandemic began in 2020. And, in that spirit, ReUNITED is our conference theme.

We advise any of you planning to attend to reserve your room quickly to get the space that best suits your family’s needs at our discounted block rate of $139 a night for standard queen and king rooms. The block includes 12 handicapped-accessible rooms available on a first-come, first-served basis. 5 of those have roll-in showers.

The hotel created a special website for our group’s reservations here. We were conservative with the number of rooms being held, so don’t wait too long to make your reservation if you want the special rate. You can also call the hotel to reserve a room if needed but be sure to let them know you are with NBIA to get our group rate.

The hotel is 28 miles from George Bush Intercontinental Airport and 17 miles from William P. Hobby Airport. It is just a half mile from the shops and restaurants at the city’s famous Galleria – America’s fourth-largest mall – and three miles from Memorial Park and the Houston Arboretum and Nature Center. Downtown Houston is six miles away.

The light rail system’s METRORapid Silver Line runs along Post Oak Boulevard in dedicated lanes and has a stop about 350 feet from the entrance to the hotel. The metro has wheelchair accessibility with a fare of $1.25 for three hours. It goes to the Galleria and other places of interest, with service every 12 minutes. It is possible to transfer to a city bus that goes to the airport and other locations.

We will officially launch the conference for our ReUNITED community at Thursday night’s welcome dinner. Over 100 U.S. families have been diagnosed since our 2019 family conference, and we look forward to welcoming them and seeing old friends.

Like our 2019 conference, this one will feature disease-specific clinical meetings on the first day, Thursday, with a welcome dinner that night and an opportunity for families to mingle and feel more comfortable engaging throughout the weekend.

Friday will be packed with presentations on communication, non-traditional therapies, traveling with a disability, navigating the school system, options for transition care after school, and independent living for adults with NBIA. Many more sessions are in the works. Our information-filled day will end with a memorial service for NBIA individuals no longer with us.

Saturday morning sessions will be dedicated to research updates. Then, we will load up the bus for a picnic at Firetruck Park. Lunch and games are on the menu. We will also mark the occasion with our group photo wearing our conference T-shirts, which will be available to purchase with registration. Saturday evening we will have our epic dessert social, including music and dancing.

Sunday the conference will wrap up with additional morning sessions, including a commemorative slide show recapping special moments during the conference. Don’t miss it. We’ll have a chance to say goodbye before ending the conference at noon.

We hope to be able to live-stream some sessions as we have done in the past, and virtual participants will be able to engage by posting comments and questions, monitored by our social media director.

You don’t want to miss this unforgettable experience to be ReUNITED and make new connections with families and researchers from around the world. Book your hotel now and be on the lookout for registration to open in early 2023.

Conference Scholarship Fund

We will be offering conference scholarships to help some who otherwise couldn't attend. For those wishing to contribute to our scholarship fund and help a NBIA family attend, you can do so here.

Depending on how many apply and how much our donors provide, we hope to help applicants by waiving registration fees and reducing their hotel costs. Other travel costs are not covered. Scholarship applications will be available when registration opens next year.

Conference Sponsor Information

We need conference sponsors to help us defray costs. We expect this conference to be our most expensive gathering ever. We strive to keep registration fees low, and sponsorships help make that possible.

We have a form and sponsorships for $10,000 and under here, with payment by credit card. Potential sponsors are welcome to contact Amber Denton by email at adenton@NBIAdisorders.org with any questions.

If you know an individual or company that might be interested in sponsoring, please share our sponsorship letter and sponsorship information form with them.

 

Sponsorship Opportunities

Sponsorship Letter

Sponsorship Submission Form

 

Partners

nbia alliance logo1NBIA Cure logoRare Disease Day PartnerRare ConnectTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes


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