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Ninth International NBIA Disorders Association Family Conference

2017 Family Conference Wrap-up Video

The Ninth International NBIA Disorders Association Family Conference was held on June 1 to 4, 2017 in Deerfield, Illinois.

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New this year, we had a get together on Thursday from 5:00 – 6:00 p.m. for those in our Mentor Program.

We had 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.

Attendees at our sessions on Friday, Saturday and Sunday heard the latest research news and possible therapies for NBIA. We had 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.

At our family picnic on Saturday afternoon we took a group photo, played games and had a short memorial tribute.

On Saturday evening we had a dessert social with our Silent Auction and end the night with a DJ and dancing. On Sunday morning we had our session for NBIA adult individuals, along with two other general sessions, and then concluded at noon with our traditional closing ceremony.

2017 Family Conference Photo Montage Video

Premier Conference Sponsor

Retrophin logo

We are grateful to Retrophin, Inc. for their sponsorship.

Family Conference Program

Please click the link below to view the final conference program.

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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

2017 Conference Photos

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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