About the 2025 FOP Family Gathering

Family Gatherings are an exciting opportunity to learn from FOP experts and one another, reconnect with old friends, and develop new relationships. The IFOPA is pleased to present the 2025 Gathering on November 13-15 in Minneapolis, Minnesota, USA. Please note that all meeting presentations and materials will only be available in English. 

Agenda:
Thursday, November 13 (3 to 10 pm) – The Family Gathering will begin on Thursday afternoon with a New Family Orientation for first-time attendees. This time before the event's official start will help participants learn about the IFOPA, the FOP community, and tips for a successful and enjoyable Family Gathering event. Youth attendees will also be able to visit our designated child care space (The Fun and Teen Zones) in the afternoon to meet staff and become familiar with program offerings. A welcome dinner for all attendees will take place on Thursday evening. 

Friday, November 14 – We’ll have a full day with presentations in the morning and breakouts in the afternoon. Ask an Expert meetings will also take place on Friday afternoon. There will be a group dinner at the hotel on Friday evening. 

Saturday, November 15 – Saturday will be the last day of general sessions in the morning, followed by an afternoon of fun and engaging workshops. Ask an Expert meetings will also take place on Saturday morning and afternoon. There will be a group dinner at the hotel on Saturday evening.

Sunday, November 16 – Sunday will be an additional day of Ask an Expert meetings for those families who are local or driving to participate in the Family Gathering.

Check out the preliminary itinerary.

Ask an Expert Meetings

During the 2025 Family Gathering, there will be an opportunity for those families that are interested to meet privately with FOP doctors, dentists and an occupational therapist committed to supporting our community. The purpose of these meetings is to allow families to speak with experts in the FOP field and ask questions about recent concerns. No written notes will be provided following your meeting, but you are welcome to reach out to FOP experts following the meeting to connect them with your local care provider(s). In your registration form, you will have the opportunity to sign up for the following meetings:

• Ask A Doctor Meeting: facilitated by Drs. Mona Al Mukaddam, Ed Hsiao, Fred Kaplan and Robert Pignolo
• Ask A Specialist Meeting: facilitated by Dr. Patricia Delai (dermatologist) and Dr. Clive Friedman (dentist)
• Ask A Tool Expert Meeting: faciliated by Occupational Therapist and IFOPA Family and Provider Support Coordinator  Melissa Davis

Registration Rates

Registration includes Thursday's dinner, two breakfasts, two lunches, and two dinners on Friday and Saturday.

Registration Rates for FOP Families

• Individual living with FOP - Complimentary 

• First family member, caregiver or friend - $115 USD

• Additional family members or attendants (age 16+) - $165 each USD

• Additional family members or attendants (5 to 15 years old) - $85 each USD

• Additional family members or attendants (0-5 years old) - Complimentary

Academic Researcher or Health Care Professional - $375 per person

Biotech, Pharma and Other Corporate Entities - $550 per person

Event Hotel

The 2025 Family Gathering will be held at the DoubleTree by Hilton Hotel Bloomington - Minneapolis South. The IFOPA is offering a special room block at the event hotel at the rate of $139/night. This rate is available for stays between Tuesday, November 11 and Monday, November 17, 2025. Reservations should be made between May 1 and October 17, 2025 to receive this discounted rate. Rooms are available with a king bed (with a sleeper sofa) or two double beds.

A link to book your hotel room at this special rate through the IFOPA booking link will be available in your registration confirmation email.

Please note: The IFOPA has reserved all of the accessible rooms at the DoubleTree Hotel where the Gathering is being held. We will work directly with families to assign those rooms based on individual needs, which we request you share in your registration form. 

Accessible rooms will be assigned on a first-come, first-served basis. The DoubleTree has the following 13 accessible rooms available:

• 2 Double/Double roll-in showers
• 3 King roll in-shower
• 8 Double/Double tub (with grab bars in the shower and by the toilet)

Once all of the accessible rooms in the DoubleTree are booked, we will assist families by helping them book an accessible room at the Sheraton Hotel (0.2 miles away) at the same rate as the DoubleTree ($139/night ($161/night with taxes and fees.) An ADA shuttle between the hotels (shown below) will be available to help transport Family Gathering attendees back and forth between 6 am and 10:30 pm. 

Travel

Minneapolis–Saint Paul International Airport (MSP) is the closest international airport to the DoubleTree by Hilton Hotel. The hotel provides a complimentary airport shuttle from the Minneapolis-Saint Paul International Airport. However, because this shuttle is not wheelchair accessible, the IFOPA will provide another shuttle only for those families traveling with a wheelchair. You will be asked to share if you will need wheelchair shuttle support in your registration form.