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Ninth International NBIA Disorders Association Family Conference

REGISTRATION IS NOW CLOSED. Please contact Patricia Wood at pwood@NBIAdisorders.org with any registration questions.

Hyatt Deerfield hotel photo

Please join us for the Ninth International NBIA Disorders Association Family Conference June 1 to 4, 2017 in Deerfield, Illinois. The conference is open to all NBIA families, friends, members of the medical 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, June 1, with registration open from 4:00 – 7:00 pm in the foyer outside the Regency Ballroom.

New this year, we will have a get together on Thursday from 5:00 – 6:00 p.m. 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 have a Happy Hour “Getting To Know You” session on Thursday evening from 6:00 – 9:00 pm. We’ve found that this is a fruitful way to kick off the conference. Families learn about each other through various ice-breakers and feel more comfortable engaging with others throughout the weekend. Appetizers will be served at this event.

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 a breakout session on Friday morning to allow specific NBIA disorder groups to get together and share with each other and another breakout session on Friday afternoon to allow for topics that appeal to different segments of our attendees.

Our family picnic on Saturday afternoon is 6.7 miles and a 12 minute drive from our hotel. We will have transportation for those who do not have a car. We will take a group photo, play games and have a short memorial tribute 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 session for NBIA adult individuals, along with two other general sessions, and then conclude at noon with our traditional closing ceremony.

Premier Conference Sponsor

Retrophin logo

We are grateful to Retrophin, Inc., which again has agreed to be our premier sponsor. We 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 Patricia Wood at pwood@NBIAdisorders.org or call 619 588-2315 for more information.

Preliminary Family Conference Program

Thursday, June 1

  • 4:00 pm – 7:00 pm: Conference Registration
  • 5:00 pm – 6:00 pm: Mentoring Program Get Together
  • 6:00 pm – 9:00 pm: Happy Hour Appetizers & “Getting to Know You Session”

Friday, June 2

  • 9:00 am – 5:30 pm: General Sessions on various topics, breakout sessions in morning and afternoon. Lunch provided.
  • 5:30 pm on: Free time to explore Chicago
    Hotel has free shuttle to within 5 miles of hotel. This includes Lake-Cook Metra train station to various points of interest, including downtown Chicago.

Saturday, June 3

  • 8:30 am – 11:00 am: NBIA Research Updates. NBIA researchers will share their work with us.
  • 11:00 am – 11:30 am & 11:45 am – 12:15 pm: Breakouts to answer questions, discuss research information shared in sessions for specific disorders.
  • 1:00 pm – 5:00 pm: Picnic Lunch, group photo, games and memorial tribute at nearby park.
  • 8:00 pm – 11:00 pm: Dessert Social, Silent Auction, DJ & Dancing.

We will be having a silent auction for gift baskets donated by NBIA families, friends and board members with all proceeds going to NBIA Disorders Association. All families are encouraged to participate and donate a basket. Suggestions are items from your state or country, a favorite hobby, something made or donated by companies you have contacted, or anything you like! Please contact Pamela Craft to let her know if you are bringing a basket or item to the conference or if you have any questions. Her email is pscraft@gmail.com

Sunday, June 4

  • 9:00 am – 9:15 am: Announcements
  • 8:45 am – 10:00 am: Breakout session for Adult NBIA individuals (over 18)
  • 9:15 am – 11:30 am: Sessions
  • 11:30 am – 12:00 pm: Closing Ceremony

Session topics under consideration:

  • Keynote speaker
  • NBIA Research
  • NBIA treatment options – latest updates
  • Process of basic research
  • NBIADA grant reward process
  • Rules on engaging with industry
  • Considerations for participation in clinical trials
  • Breakout sessions: Disorder specific topics; coping with new diagnosis, supportive programs along the way; transitioning to adult services /Special Needs Trusts
  • Raising awareness, volunteering, fundraising
  • NBIA Alliance Programs/NBIADA Board Intro/NBIA World Map
  • Gene Editing – CRISPER/CAS9 research for the future

Conference Registration

Fees include materials, Happy Hour on Thursday evening, 2 lunches, coffee breaks, a Saturday night dessert social and child care during sessions. A complimentary buffet breakfast is included with the price of the room.

  • $140 one person
  • $100 each additional family member in same household
  • No charge for NBIA individuals or children under 7 years old


REGISTRATION IS NOW CLOSED. Please contact Patricia Wood at pwood@NBIAdisorders.org with any registration questions.

Appointments with NBIA Physician Experts

Our NBIA physician experts will be meeting with families starting the evening of May 30, for those who want individual or family appointments, and will continue into Thursday. Appointments are limited to first time families on a first-come, first-served basis to registered participants until full.

Because some of our doctors will be speaking and attending conference sessions, there will be no family appointments during the conference.

Please schedule your appointment early if you want to take advantage of this opportunity to meet with leading NBIA experts and discuss particular issues or treatment options. Click the button below to fill out and email completed appointment form to pwood@NBIAdisorders.org. You must be registered first before sending in appointment form.

Appointment with NBIA Physician Experts Form

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 families requesting help and donations received. Preference will be given to first time attendees. Applications must be received no later than April 1.

Scholarship Application Form

Hotel Reservations

Hyatt Regency Deerfield
1750 Lake Cook Rd, Deerfield, IL 60015
Phone: (847) 945-3400

A limited number of suites have been set aside for our conference. To reserve a room, you can call the hotel directly at 847 945-3400 and indicate you wish to book under the NBIA Disorders Association room block, or you can make a reservation online at a website set up especially for our group by simply clicking the button below.

The suite rate is $119 with breakfast included for up to 4 per room. Please contact Patty Wood at pwood@NBIAdisorders.org if you have any problems registering with the hotel and not being quoted the proper rate. All reservations must be made by May 2 to be guaranteed our discounted rate. Since there are a limited number of rooms available at this rate, it is possible our group rate will be filled before that date, so it is best not to wait too long to make your reservation.

Suites have either one king bed or two queen beds and are a bit smaller than the suites we have enjoyed at past conferences. The bedroom does not have a door but is separated from the living area by a partition that holds a TV that can be turned for use in either area. The living area has a sofa bed, desk, mini-refrigerator, and coffeemaker. There is a microwave available on each floor of the hotel near the elevators and ice machines.

A small number of rooms (both King and Queen suites) are accessible and will be available on a first come, first served basis. They must be requested at the time of booking. Anne Grant, Convention Services Manager at the Hyatt Deerfield, says that families needing to book reservations for handicapped accessible rooms should contact her directly at +1.847.597.4523 to insure they get the type of room they need and that they are still available. The hotel has 8 handicapped accessible rooms with 2 Doubles and 6 King of which 3 have a roll in shower.

Also, if you would like to book a room for up to 3 additional days prior to or after the dates available online, you should also contact Anne Grant by phone at +1.847.597.4523 (domestic) or email at anne.grant@hyattdeerfield.com (International) and she will help you add those days to your reservation at our group rate.

The hotel is a non-smoking facility and offers an indoor heated swimming pool and whirlpool, plus a 24-hour fitness center. High-speed Internet access is available in guest rooms at no additional charge for our group. Pets are not allowed except for service animals.

Other amenities:

• Shuttle service upon request (5 mile radius)
• Enterprise Car Rental on-site – call 847-374-1527 for more information.
• Complimentary buffet breakfast each morning for up to 4 guests per room from 6:30-11 am.
• Starbucks Kiosk offering coffee, pastries, and to-go food items.
• Jaxx Bistro serving lunch 11 am – 2 pm and dinner 5 pm - 10 pm in restaurant; room service available until 11 pm.
• Jaxx Lounge serving signature cocktails and delicious appetizers.
• Complimentary parking.

Make a Reservation

Conference Care Room Information for Children, Teens and Adults


  • Friday, June 2: 8:45 am – 12:30 pm & 1:15 pm – 5:30 pm
  • Saturday, June 3: 8:15 am – 12:15 pm
  • Sunday, June 4: 8:45 am – 12:00 pm

The care room is across the hall from the meeting room for easy parent access. Those who cannot sit still and 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 a TV/DVD available for movies. Please bring favorite movies to share, along with any favorite games or toys. Volunteers 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, happy hour on Thursday evening, and the dessert social on Saturday evening.

There will be no on-site child care registration this year, 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.

Care Room Information Form

RARE Bear Program

NBIA Disorders Association is collaborating with Rare Science, Inc., to bring RARE Bears to our family conference. Community volunteers create one-of-a-kind teddy bears for one-of-a-kind “rare” kids.

If you would like to have a RARE Bear for your NBIA child or are an affected individual, please request one on the conference registration form and fill out the required consent form. The bears will be given out at the conference.

RARE Bear Consent Form


The hotel provides a complimentary shuttle based upon availability for destinations within 5 miles of the hotel. Please let the front desk know if you need a ride. Hours the shuttle van is available are 7 am to 10:30 pm. It is an 11 passenger van, but is not handicapped accessible.

The Hyatt Regency Deerfield is 13 miles and a 25 minute drive to O’Hare International Airport and 42 miles and a 45 minute drive to Midway Airport. They have agreements with the following taxi and limousine service for transportation to and from the airports:

  • 303 TAXI: 847-256-8294 at www.taxiwithus.com Use account #3401 to request special Hyatt inclusive rates of $32 to and from O'Hare; $62 to and from Midway. At O’Hare you should call when ready to be picked up and give account # and they will tell you the cab number to look for, as they always have cabs at this airport. For Midway you should call ahead and make a reservation so they know to be there when needed.
  • HANA Travel & Limousine Service Inc.: 847-293-6004; Professional chauffeur service in Lincoln Towne Car to and from O’Hare for $45/first person + $3 each for up to 3 additional passengers; $75+ $3 each for up to 3 additional passengers to and from Midway – be sure to make reservation 1 day ahead and confirm rate before booking.

Additional Transportation Options:

American Taxi: 847 673-1000 at www.americantaxi.com has a flat rate of $30 to and from O'Hare and $60 to and from Midway. Call when ready to be picked up and they will give you cab #.

All suburban taxis require you to call for pick up. Do not get a cab from the line as they are for city cabs.

For those who need a handicapped accessible van for a ride to and from the airport to the hotel there is All-Ways Medical Carriers at 800-709-0700 (Illinois) and 847-279-2740 (Out of state) or
www.all-ways.us Be sure and call and make a reservation ahead of time.  Based in the northern suburbs, this transportation company serves Cook, Lake and DuPage counties. It has lift-equipped vehicles of various capacities and can provide accessible transportation for any purpose including airport and hotel shuttle service. Dispatchers available daily from 6am-8pm.

Public transportation will take over 2 hours but the cost is under $10. Take the CTA Blue Line from O’Hare to Clinton-Blue and then walk 8 minutes to Union Station to the Milwaukee North train to Lake-Cook station. From there you could take a taxi to the hotel (less than 5 miles) or call the hotel at 847 945-3400 and see if their complimentary shuttle is available to pick you up.

You might also try Uber for a less expensive fare which should be in the $20-$30 range from O’Hare airport to the hotel.

Helpful Information:

The hotel shuttle goes to the Lake-Cook Metra Train Station where you can purchase a ticket for $6.50 to downtown Chicago or an $8 weekend pass. It takes approximately 30-50 minutes depending on the number of stops the train makes.

Insider Tips for Sightseeing for All:


There are no restaurants within walking distance of the hotel, but we will be able to provide a list of nearby ones that will deliver to the hotel and the hotel restaurant is also available. There are many restaurants nearby for those with transportation and the hotel front desk has a list of popular nearby places the shuttle goes to, or you can drive on your own.

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.


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2017 Conference Quick Jump

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

Conference Homepage

Mentor Program



Appointments with NBIA Experts


Hotel Reservations

Hotel Photos

Care Room

RARE Bear Program


Helpful Information

Tax Deduction Info

Forms & Downloadables

Appointment with NBIA Experts Form

Scholarship Application

Care Room Information

RARE Bear Consent Form

Conference Sponsors Needed

Sponsorship Request

Sponsorship Form

Help Other NBIA Families Attend

Please support scholarships for needy families to attend conference. If you’d like to help a family who would not otherwise be able to afford the conference, we hope you’ll consider donating to our Conference Scholarship Fund. We appreciate the support this program has always received, and our families are so grateful for this opportunity to connect with others and make lasting friendships.

Please consider a donation today and put “Conference Scholarship Fund” in the “additional info box” so we know to designate it properly.


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