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Tenth International NBIA Disorders Association Family Conference

Conference Registration is Closed. Please contact Patricia Wood at 619 588-2315 with any questions.

The Tenth International NBIA Disorders Association Family Conference is May 30 to June 2, 2019, in the Palmetto State’s jewel, historic Charleston, S.C.

CharlestonCharleston is a seaport city, established in 1670, and is known for the Battle of Fort Sumter, which signaled the start of the Civil War in 1861. Today, the city is known for its well-preserved architecture, sophisticated restaurants and friendly people. Charleston has received many accolades, including being voted by readers of Condé Nast Traveler magazine as the No. 1 city in the U.S. from 2011 to 2015 and "America's Most Friendly City” in four of the past five years.

Our family conference is open to all NBIA families, friends, members of the medical and research community, and anyone who is interested in learning more about NBIA.

We are planning a variety of stimulating topics and plenty of time to socialize. Our conference kicks off on Thursday, May 30, with registration open from 8:30 am to 5:00 pm.

New this year, we will hold pre-conference clinical sessions on Thursday for specific disorders during the day. 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.

For the second year, we will have a get together on Thursday from 4:15 – 5:15 pm for those in our Mentor Program. If you are a returning family or first time attendee at our conference and are interested in participating, please designate on your registration and we will be in touch with more details.

We will start our conference with a sit down dinner on Thursday evening from 5:30 – 8:00 pm. There will be presentations and a “Getting to Know You Activity” on this first evening together.

Attendees at our sessions on Friday, Saturday and Sunday will hear the latest research news and possible therapies for NBIA. We will have general sessions for all attendees intermingled with breakout sessions on Friday afternoon to allow for topics that appeal to different segments of our attendees.

Our family picnic on Saturday afternoon is at Wannamaker Park in Charleston. It is about 10 miles and an 11 minute drive from our hotel. We will have transportation for those who do not have a car. We will take a group photo and play games at this fun social time for our families.

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 our sessions for NBIA adult individuals, along with other general sessions, and then conclude at noon with video highlights and sharing by attendees.

Our Sponsors

Retrophin, Inc. is again our premier conference sponsor. We are grateful for their continued sponsorship, going back to 2013. In addition, ApoPharma, Inc., and CoA Therapeutics are elite sponsors for our 2019 conference.

Retrophin logo

apo pharma logo1

CoA Logo

We still need additional sponsors to help us defray conference costs which have risen with attendance. We work hard to keep registration fees low and sponsorships help make that possible. Potential sponsors are asked to fill out the Sponsorship Form or contact Colleen Lukoff at clukoff@NBIAdisorders.org or call 760 591-9455 for more information.

Become a Sponsor

Family Conference Program

Please click on the link below to view a preliminary conference program.

View Program

Conference Registration

Conference registration is closed.

Fees include materials, dinner on Thursday evening, 2 lunches, coffee and tea breaks, a Saturday night dessert social and child care during sessions. A complimentary buffet breakfast is included with the price of the room, as is an Evening Reception with free drinks and snacks.

  • $165 one person
  • $145 each additional family member in same household
  • No charge for NBIA individuals or children under 7 years old

Conference Registration is Closed. Please contact Patricia Wood at 619 588-2315 with any questions.

NBIA Conference Scholarships

We will have a limited number of scholarships available to NBIA families who could not otherwise afford to attend. Amounts available will be dependent on the number of friends requesting help and donations received. Preference will be given to first time attendees. Applications must be received no later than April 1.

Apply for a Scholarship

Hotel Reservations

Ebassy Suites CharlestonEmbassy Suites by Hilton Charleston Airport Hotel & Convention Center
5055 International Blvd.
Charleston, SC 29418
(843) 747-1882

The Embassy Suites by Hilton has created a special website for our group (see link below), making it possible for participants to easily reserve a room. The cost is $139 a night for up to two adults and any children 18 and under. Each additional adult is an extra $10 per night. The hotel has made an exception to not charge anything extra for adults who have a g-tube for feeding.

Each suite features a separate living room and bedroom, two flat-screen TVs, a work desk, small refrigerator and microwave. A buffet breakfast is included with this price, along with a complimentary Evening Reception with drinks and snacks.

If you would like to book a room for up to 3 additional days prior to or after the dates available on our special group website, you should call the hotel at (843) 747-1882 to add those dates if available at our group rate.

If you require a handicapped-accessible room, and rooms that meet your needs are not available, please contact pwood@NBIAdisorders.org for information on other Hilton hotels within walking distance that have handicapped accessible rooms.

All reservations must be made by April 26 to be guaranteed our discounted rates. It is best to make your reservation at the same time as when registering for the conference. Since there are a limited number of rooms available at this rate, it is possible our group rate will be filled before that date.

If you need to cancel a reservation, you must do so at least 72 hours prior to scheduled arrival or you will be charged for one night’s room rate and tax.

Other Hotel Amenities:

  • Coin Laundry ($1.75)
  • Safety Deposit Box
  • Fitness Room
  • Complimentary Wi-Fi in Guestrooms, Hotel Atrium and Foyer in Convention Center
  • Complimentary Airport Shuttle
  • Discounted $5 parking for NBIA group in Hotel Parking Lot

Make Room Reservations

Conference Care Room Information for Children, Teens and Adults


  • Friday, May 31: 8:30 am -12:15 pm; 12:45 pm -6:15 pm
  • Saturday, June 1: 8:00 am -12:15 pm
  • Sunday, June 2: 8:45 am - 12:15 pm

The care room is next door to the ballroom where general sessions will be held. Those who cannot sit still and be silent must be in the care room during sessions. There is no age limit for those in the care room and all NBIA individuals are welcome. A liability waiver is required.

We will have TV/DVD available for movies. Please bring favorite movies to share, along with any favorite games or toys. Volunteers and the two 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 during breakfast, lunch, dinner on Thursday, and the dessert social on Saturday evening.

There will be no on-site child care registration, so please be sure and register everyone who will be in the care room by filling out the Care Room Information Form and sending it in as part of your conference registration. If you have a family member that would like to sign up for a volunteer shift in the care room, please note their name and either their cell phone or email address so that we can contact and schedule them for a date and time slot.

Care Room Information Form


The hotel provides a complimentary 24 hour hotel shuttle to Charleston International Airport just two miles away. When arriving at the airport, call (843) 747-1882, press O for operator and let the hotel know you need to be picked up. When going from hotel to the airport, let the front desk know if you need a ride. It is a 10 passenger van, but it is not handicapped accessible.

From Greenville-Columbia - Go I-26 East towards Charleston and take Exit 213A. The exit ramp brings you to Montague Avenue. Follow Montague one half mile to International Boulevard and turn right onto International Boulevard. The hotel is on the left.

From Charleston - Take I-26 West towards Columbia exiting at Exit 213 to Montague Avenue. Turn left at the traffic light onto Montague. Follow Montague three quarters of a mile to International Boulevard. Turn right onto International and our hotel is on the left.

From Savannah-Jacksonville - Take I-95 North to Exit 33. This brings you to Highway 17. Travel until you reach the interchange for I-526 to North Charleston-West. Follow I-526 to Montague Avenue, exit and turn right. Follow to International Boulevard. Turn left onto International. The hotel is on the left.

The hotel is within walking distance (approximately 10 minutes) of the Tanger Outlet Center featuring numerous branded stores to browse and many restaurants to choose from in the center and nearby.
The hotel shuttle will also take guests to destinations within a 3 mile radius. Inquire at the front desk.

There is a Bus stop at the North Charleston Visitors Center that is only a 5 -10 minute walk to the hotel. Here you can catch a bus going downtown or to the airport throughout the day. There is an Airport Express bus that goes just to the airport, visitor center, Tanger Outlet Center and the Charleston Visitor Center in downtown Charleston. The Express bus fare is $3.50 per person, with seniors 55+ discounted to $1. You must have exact change. Buses are handicapped accessible, with room for two wheelchairs, so you could take it from the airport and then walk from the bus stop to the hotel if needed.

For more information on bus service, please call 843 724-7420 or visit ridecarta.com.

The hotel is located just eight miles north of the historic coastal downtown of Charleston with its charming atmosphere and array of restaurants, shopping and historical landmarks to discover.

Medical Conference Tax Deductions

There are two government rulings that help families write off expenses for medical conferences and might prove helpful:

  1. Families can potentially use pre-tax dollars from an FSA to cover many of the costs of attending the NBIA meeting, with a “Letter of Medical Necessity” from a treating provider. It would be easy to make the argument in the letter that for an ultra-rare disorder, attending the conference is the
    best way to get medical information. These rules are not plan-specific: they are straight from the IRS:
    Medical Conference - Includes expenses for admission and transportation to a medical conference, if it relates to a chronic disease suffered by you, your spouse or your dependent and if the conference is primarily for and essential to the person in need of medical care. Reimbursement also includes transportation expenses to the city where the conference is held, plus local transportation to the conference. Most of the time at the conference must be spent attending sessions on medical information. Required documents: letter of medical necessity
  2. If you don’t have a FSA, you can still write off some expenses from attending a family conference under these rules: Topic 502 - Medical and Dental Expenses • Payments made for admission and transportation to a medical conference relating to a chronic disease that you, your spouse or your dependents have (if the costs are primarily for and essential to necessitated medical care). However, you may not deduct the costs for meals and lodging while attending the medical conference.

Get Social!

 While at the conference, use the following hashtags in your social media posts:




2019 Conference Menu

Click the buttons below for more information about the NBIA Family Conference.

Conference Homepage

Conference Program

Hotel Info & Reservations

Mentor Program Information

Care Room Information Form

Charleston, SC Photos

Donate to the Scholarship Fund

Become a Sponsor

While at the conference, use the following hashtags in your social media posts:



Scholarships & Sponsorships

Click the buttons below for more information about Scholarships and Sponsorships for the NBIA Family Conference.


Information about contributing to the conference Scholarship Fund.

Scholarship Contribution (.pdf)

Scholarship Contribution (.doc)


Information about becoming a conference sponsor.

Sponsorship Info (.pdf)

Sponsorship Info (.doc)

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