13th International NBIA Disorders Association Family Conference
February 2025
CONFERENCE REGISTRATION IS NOW OPEN!
Please join us for the 13th International NBIA Disorders Association Family Conference from May 29 to June 1, 2025, in Greenville, South Carolina.
Greenville, known for its vibrant downtown and scenic beauty, will provide a welcoming and comfortable setting for our conference. The event will be held at the Embassy Suites Golf Resort and Conference Center, located at 670 Verdae Blvd., Greenville, SC 29607. This venue offers excellent amenities such as free breakfast and complimentary Wi-Fi and parking. With shuttle service provided from the airport and within a 5-mile radius of the hotel, you have easy access to dining, shopping and entertainment options.
Our family conference is open to all NBIA families, members of the medical and research community, and anyone who is interested in learning more about NBIA disorders.
We will be holding disease-specific pre-conference clinical sessions on Thursday during the day for PKAN, BPAN and PLAN families. MPAN clinical sessions will be on Friday morning. NBIA families will have the opportunity to ask clinical questions via a survey that will be sent to them after they register. These questions will be addressed in the clinical session for that disorder.
Also, on Thursday in the late afternoon, we will be holding a session for newly diagnosed families and those that have never attended an in-person family conference to share and learn what to expect from the coming weekend.
Thursday evening from 6:00 - 9:00 PM, attendees are invited to join in for a fun "Getting to Know You" activity at our conference kick-off dinner.
Attendees at our sessions on Friday, Saturday and Sunday will hear the latest research news and possible therapies for NBIA individuals. We will have general sessions for all attendees along with breakout sessions on Friday, which will allow attendees to choose sessions of interest that cover a variety of meaningful topics relevant to NBIA disorders.
Our family picnic on Saturday afternoon is at Conestee Park. It is about 4 miles and a 10-minute drive from our hotel. We will have transportation for those who do not have a car. We will take a group photo wearing our conference t-shirts and play games at this fun social time for our families. Also during the picnic, we will pay tribute to those that have lost their battle with NBIA with a heartfelt memorial. To our NBIA angels, “Your life was a blessing, your memory a treasure, you are loved beyond words and missed beyond measure.”
On Saturday evening we will have a dessert social with our Silent Auction and end the night with a DJ and dancing. On Sunday morning we will have one last chance to share disease-specific personal experiences, hear from a panel on the NBIA sibling experience along with a general session on social recreational opportunities. We then conclude with our closing ceremony sharing video highlights of our unforgettable weekend.
Conference Registration
Fees include materials, dinner on Thursday evening, 2 lunches, coffee and tea breaks, a Saturday night dessert social and childcare during sessions.
- $190 adults and children 12+ yrs.
- $100 children 5-11 yrs.
- No charge for NBIA individuals or children under 5 years old.
Register Here!
Hotel Reservations
670 Verdae Boulevard
Greenville, South Carolina 29607, USA
+1 864-676-9090
The Embassy Suites Golf Resort and Conference Center in Greenville has created a special website for our group making it possible for participants to easily reserve a room.
Rooms are available at a special conference rate of $149 per night, plus fees, based on double adult occupancy per room. Additional adults sharing a room will incur a $10 charge per person, except for NBIA individuals, who are exempt from this extra fee. For families or attendees in need, the hotel offers eight accessible rooms and suites. We encourage those families to book quickly, as these rooms are typically the first to sell out.
The cutoff date to reserve a room at the $149 rate is April 28, 2025. Please don’t delay in making your reservation, as we have a limited amount of rooms reserved at this price.
The Embassy Suites provides a range of outstanding services to enhance your stay during the conference. Guests will enjoy complimentary Wi-Fi, free parking, and a daily breakfast buffet with freshly made omelets to start each morning off right. In the evenings attendees can relax and mingle in the lobby during the hotel’s reception featuring complimentary snacks and beverages.
The hotel has a complimentary shuttle that provides transportation to and from Greenville-Spartanburg International Airport (GSP) as well as to local restaurants and attractions within a 5-mile radius of the hotel.
Conference Care Room Information for Children, Teens and Adults
There will be no on-site childcare registration, so please be sure and register everyone who will be in the care room on any day by filling out the Care Room Information Form and sending it in as part of your conference registration.
Hours*
Thursday, May 29 (pre-conference)
8:15 am – 10:15 am Only PKAN families attending clinical session
11:15 am – 1:15 pm Only BPAN families attending clinical session
2:15 pm – 4:15 pm Only PLAN families attending clinical session
Conference Days
Friday, May 30, 8:00 am - 12:15 pm & 12:45 pm - 5:15 pm
Saturday, May 31, 8:30 am - 12:15 pm
Sunday, June 1, 8:45 am - 12:30 am
*Hours care room is open may vary slightly if the conference schedule changes
The care room is near by the ballroom where general sessions will be held. In order to minimize distractions and interruptions to live presentations and recordings, individuals who may have difficulty remaining quiet and seated during sessions will need to utilize the care room. There is no age limit for those in the care room and all NBIA individuals are welcome. A liability waiver statement is required to be signed and is included in the Care Room Information Form below.
Those in the care room can look forward to participating in themed activities and fun games that will be designed for a variety of differing abilities.
Volunteers and the nurses in the care room will not be responsible for tube feedings, diaper changes, suctioning or other medical procedures.
Those in the care room will be with their families for dinner on Thursday, Friday lunch, dessert social on Saturday evening. The care room will also be open on Sunday until 12:15 to allow caregivers to pack up and check out, after our closing ceremony ends at 11:15am.
Transportation
Flying
There are many airports within driving distance to Greenville. We have created an airport guide to help those needing to find direct or the most affordable flight options for their family.
There is a complimentary Embassy Suites Shuttle that provides transportation to and from Greenville-Spartanburg International Airport (GSP).
NBIA Conference Scholarships
For those wishing to contribute to our scholarship fund and help a NBIA family attend, you can do so here. You can also add scholarship support during the registration process. Your generosity will help us bring a family to the conference that would otherwise be unable to attend.
We strive to cover the cost of hotel and registration fees for as many families as possible that apply for a scholarship. A $150 dollar donation would help pay for one night of hotel for a family. All donation amounts are greatly appreciated.
To apply for scholarship assistance please complete the Scholarship Application below.
Applications must be received no later than March 15.
Medical Conference Tax Deduction Information
Conference Sponsors
Diamond Sponsor
Titanium Sponsors
AND 
A heartfelt thank you to our generous sponsors for making this conference possible.
So far, we are grateful to have BridgeBio as a Diamond Sponsor, Maddie B’s Army and Sydney’s Song & BPAN Tribe as Titanium Sponsors, and Chiesi Global Rare Diseases, INADcure Foundation, Loving Loic Foundation and Paul McClintock as Platinum Sponsors.
Our Gold Sponsors include ALJ Lindsey, LLC, INAD Warriors INC., Isabel’s Chance, Poppy's Path and the Wildvank Family.
We also extend our appreciation to our Silver, Copper, and Bronze Sponsors for their generous support. Thank you for helping us bring the NBIA community together.
We need additional 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.
A $5,000 sponsorship would cover the cost of our family picnic at Conestee Park including bus transportation, food, picnic supplies, and games.
A $2,500 sponsorship can pay for program printing, signage, banners, and registration supplies such as tote bags and name tags for all attendees.
A $1,000 sponsorship would bring one researcher or clinician to the conference to learn from our community and share vital research updates.
A $500 sponsorship helps us to provide engaging materials and activities for our care room for NBIA individuals and their siblings.
If you know an individual or company that might be interested in sponsoring, please share our sponsorship letter and sponsorship information form with them.
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.
