2019 FOP Family Gathering Preview

2019 Family GatheringWe hope you are making plans to join us for the FOP Family Gathering November 14-17, 2019 in Orlando, Florida.

The Family Gathering begin directly following the FOP Drug Development Forum. The Drug Development Forum is an invitation-only scientific meeting designed to maximize the dialogue and information exchange among FOP clinicians and academic and pharmaceutical researchers, as well as foster an environment of collaboration among the participants.

To assist with your planning for the Family Gathering, we will be accepting applications for travel and lodging stipends now through April 15 and will notify applicants before Family Gathering registration opens to first-time Family Gathering attendees and those living in the Southeast on May 1.

Below is a preview of the agenda, as well as the registration rates and registration schedule. 

**Please note that the 2019 Family Gathering will only be offered in English. 

Travel and/or Lodging Stipends

The travel and lodging stipends provided by the IFOPA are intended to serve as a resource for families whose financial circumstances would otherwise prevent them from being able to attend the Family Gathering. There are two types of stipends available.

Those living with FOP (or their parents if they are under 18) are eligible to apply for one or both stipends.

  1. Lodging stipends will cover up to 3 nights of lodging (depending on where you are traveling from) for one room. Of note, most rooms with a king bed also have a pull-out sofa sleeper.
  2. Total travel stipends will not exceed $750 for a maximum of two people.

Apply now for a Travel and/or Lodging stipend

The deadline to apply for a travel or lodging stipend is April 15.

Important Notes:

All lodging stipends must be used to book a room at the hotel reserved by the IFOPA where the Family Gathering will be held. The rate is $199 per night. 

If you have previously received a travel or lodging stipend for a FOP Family Gathering, you may apply but those that have never received stipends will be considered before those who have received a stipend in the last five years. Please note, if you have only received one of the two types of stipends (for example, only a lodging stipend) in the past five years you may still apply for the other type of stipend that you have not received (for example, a travel stipend).

If you are awarded a travel and/or lodging stipend you will be asked to sign a travel and/or lodging stipend agreement. If you do not attend the Gathering, you must reimburse the IFOPA for the stipend you received, unless the cancellation is due to a medical emergency. If you experience a medical emergency and are able to receive a full or partial refund from travel and/or lodging vendors, you must refund any amounts you have received to the IFOPA.

There are a limited amount of dollars available for stipends, and the dollars will be allotted on a first-come, first-served basis for those individuals who meet the necessary qualifications (see stipend amounts listed in items 1 and 2 above).

Family Gathering Agenda

Thursday, Nov. 14 – The Family Gathering will begin on Thursday afternoon with a joint reception and dinner with attendees from the Drug Development Forum. We will celebrate this rare opportunity to have researchers, clinicians and FOP families together at the same time. The reception will include scientific poster presentations which will allow families the opportunity to learn from researchers and ask questions.

Friday, Nov. 15
 – We’ll have a full day with presentations in the morning and breakouts in the afternoon. Ask a Doctor and Ask a Dentist meetings will also take place on Friday afternoon.

Saturday, Nov. 16 – Saturday will be the last day of general sessions in the morning followed by afternoon breakouts. Ask a Doctor and Ask a Dentist meetings will also take place on Saturday afternoon.

Sunday, Nov. 17 –
Sunday will be an additional day of Ask A Doctor and Ask A Dentists meetings with the opportunity to enjoy the additional activities listed below.

**Please note that the times for Ask a Doctor and Ask a Dentist meetings are subject to change and will be finalized before Family Gathering registration opens May 1.

Throughout the weekend participants will have the chance to participate in a variety of community activities such as participating in the IFOPA Biobank, visiting Resource Connect: Independent Tool for Everyday Living, sharing your FOP Story, shopping at the IFOPA store and having your photo taken by a professional photographer.

Registration Rates

On May 1 registration will open for:

  • Families who have not previously attended a FOP Family Gathering in the United States
  • Families who currently live in the Southeast (based on the map below.)

On May 31 registration will open for:

  • Families living outside the Southeast who have previously attended a Family Gathering

We seek support of generous sponsors and donors in order to make the Family Gathering as affordable as possible. 

  • Person with FOP - Complimentary registration
  • 1st family, friend or caregiver - $100
  • All other guests 16+ - $150 per person
  • All other guests 5 to 15 - $75 per person

The deadline for registration refunds is Wednesday, November 6. After this date the IFOPA will not be able to make changes to food and beverage orders at the hotel. Registration fees are applied to those costs.


The IFOPA will offer a special room block at the event hotel at the rate of $199 per night. After completing Family Gathering registration, you will receive an email with a link to an IFOPA specific web page where you can book hotel accommodations under our room block. Reservations should be made by Oct. 21 in order to get this rate. Rooms are available with a king bed (and a sleeper sofa) or two queen beds.

Questions about the Family Gathering?

We look forward to seeing many long-time community members and welcoming new families in Orlando this November! If you have questions about the 2019 Family Gathering, please send us an email or contact Hope Newport, Family Services Manager at (816) 854-0920.

Make a Difference

Donate Connect Fundraise

Already a Member? Sign In

Sign Up for FOP Connection, Our Monthly eNewsletter