Every two years, we bring together leading BBSOAS researchers from around the world alongside our community to collaborate, share the latest research, and inspire positive change.
This unique gathering strengthens and complements our mission to support families through education, advocacy, and research, advancing the understanding and treatment of BBSOAS.
The conference is available both in person and virtually to ensure accessibility for families worldwide. Whether you’re a returning participant or joining us for the first time, we look forward to making meaningful connections and working together to shape the future of BBSOAS.

The Family & Scientific Conference 2024
Why attend?
Meet and connect with other BBSOAS families
Meet the world leading experts and BBSOAS researchers
Participate in essential research with our NR2F1 Biorepository
Gain access to the latest unpublished research from leading BBSOAS investigator
Educate our researchers on the reality of living with BBSOAS
Learn about the critical work the NR2F1 Foundation is leading
Family and Scientific Conference 2026, April 8 - 10
Book ticketsConfirmed speakers
Dr. Christian Schaaf—the first ‘S’ in BBSOAS and BBSOAS Scientific Advisory Board Researcher
Dr. Veeral Shah—Neuro-Ophthalmologist and BBSOAS Scientific Advisory Board Researcher
Dr. Silvia De Marchis—BBSOAS Scientific Advisory Board Researcher
Dr. Michele Studer—BBSOAS Scientific Advisory Board Researcher
Dr. Sarah Poliquin—NR2F1 Scientific Officer
Dr. Elsa Wassmer—NR2F1 Sponsored Post-Doc
Dr. Clement Chow—The Fly Guy! Drug repurposing expert
Dr. Ivan La Torraca—Neuropsychiatrist
Vera Zanker, CGC—NR2F1 Disease Concept Model
Dr. Magdalena Laugsch—NR2F1 Researcher

Speakers for the 2026 Family & Scientific Conference
When?
Registration and welcome: Wednesday 8 April 2026 from 4pm.
Conference and events: Thursday 9 April and Friday 10 April 2026 from 8:45am to 4pm.
Where?
Sheraton Orlando Lake Buena Vista Resort in Orlando, Florida, USA
This is a hybrid conference, you can attend virtually as well.
Live caption translations will be available for virtual attendees in the following languages:
Arabic, Cantonese, Chinese (Traditional), Chinese (Simplified), Czech, Danish, Dutch, Estonian, Finnish, French (Canada), French (France), German, Hindi, Hungarian, Indonesian, Italian, Japanese, Korean, Malay, Persian, Polish, Portuguese, Spanish, Swedish, Romanian, Russian, Tagalog, Tamil, Telugu, Thai, Turkish, Ukrainian and Vietnamese.
Book your in-person or virtual tickets for the Family and Scientific Conference 2026
Book ticketsOffers and discounted prices
Get the cost of your tickets reimbursed by raising $1,000 for the Foundation (see our FAQs for details below).
Negotiated hotel room rates are available until 16 March 2026 at the discounted price of $109 plus a daily $15 resort fee. Important: When booking, please keep the default guest count as 1 adult regardless of your group size, then select the room type that fits your group.
Sponsorship opportunities
We greatly appreciate all of our sponsors, big and small. With your help, we can make the conference the best experience for all our families attending, in person or online.
Check our variety of sponsorship options available.
Get in touch with Candice.Conseur@nr2f1.org for more information.
Frequently Asked Questions (FAQs)
Is it worth me attending in person?
If you have the ability to attend in person, we would highly recommend it. The chance to meet with other BBSOAS families and experts is an amazing opportunity. 95% of attendees last year said they would recommend families to attend in person.
Can I bring my children?
Yes, bring the whole family! Bring your BBSOAS children, siblings and even grandparents. You can book as many tickets as you need.
We won’t have any childcare available, but all children are welcome to join in the conference room. You’ll see plenty of children watching iPads, playing with toys, drawing or even napping. We’re used to this. Some families bring a sitter or grandparents to entertain the children elsewhere in the hotel. Whatever works best for your family, works for us.
Will there be time to get to know other families?
Yes. We have reserved an area in the bar on Wednesday evening for families to meet. There will be breaks throughout the day and typically families gather around the pool after the conference on Thursday. On Friday afternoon, there will be a family afternoon hosted by the Foundation at the pool area. We want to give plenty of chances for you to make connections, we know they are important.
When is the deadline to book tickets?
Book your in-person tickets by 6 March 2026 (and the hotel room rates are only guaranteed until 6 March 2025 too). You can book a virtual ticket until 5 April 2026.
What is included in the ticket price?
Breakfast on Thursday and Friday. Lunch on Thursday. Conference t-shirt, goodie bag and direct access to the world leading BBSOAS experts!
How do I get the cost of my tickets reimbursed by raising $1,000 for the Foundation?
First, book your conference in-person tickets. If you’d like to host a NR2F1 Foundation fundraiser using our fundraising tool Givebutter, reach out to jennifer.coughlin@nr2f1.org
Once you’ve raised $1,000 via the Givebutter fundraiser, we’ll refund your conference tickets up to the value of 2 adults and 1 child (BBSOAS patients are free).
Email Candice.Conseur@nr2f1.org to talk about setting up your fundraiser.
Do you have any suggestions on fundraising ideas?
Yes we do. We have suggestions on how to fundraise to cover the costs of the trip for your family. We also have suggestions on fundraisers you could set up to raise funds for the NR2F1 Foundation, and take advantage of the offer to get your tickets reimbursed by raising $1,000 for the Foundation.
Email Candice.Conseur@nr2f1.org to talk about setting up your fundraiser.
Will I still get a good experience attending virtually?
A participant in the 2024 conference was asked ‘what was the biggest take away from the virtual conference’. They said ‘Community. Even though not in person, I felt I was included.’ You’ll get access to all the same speakers and presenters to hear the latest on BBSOAS research. 100% of virtual attendees in 2024 said they’d like to attend another BBSOAS Family and Scientific virtual conference in the future.
Will tickets be available on the day at the hotel?
No. In-person tickets need to be purchased by 6 March 2026. Virtual tickets will remain available until 5 April 2026.
Do we have to stay at the hotel to attend the conference?
No, you can choose to stay wherever you like. We have negotiated rates for our families at Sheraton Orlando Lake Buena Vista Resort. This means you’re close to all the conference activities and other BBSOAS families.
When is the deadline to book as part of the hotel room block?
The deadline to receive the discounted rate of $109 per/night is Friday 16 March 2026.
What is included in the resort fee?
One free appetizer voucher per room, per stay valued at $12.00. This can be redeemed at Palms or the Zest Restaurant during dinner
Assorted flavors of infused water in the lobby from 8am-11am, daily
Access to the pools, waterslide, splash pad, and on-site fitness center
Wi-Fi in your room
Scheduled Disney shuttle transportation
When will the agenda be available?
We’ll publish the agenda on this website once it’s ready and all speakers are confirmed.
Past conferences
In 2018, BBSOAS families were brought together in Houston, Texas. Since then, the NR2F1 Foundation has hosted conferences every two years.
2024 Family & Scientific Conference
132 attendees and 23 BBSOAS patients from 11 countries around the world and 23 from the USA.
Presentations:
Watch all the presentations from 2024 on the NR2F1 Foundation YouTube channel
Intro & Welcome to the 2024 NR2F1 Family + Scientific Conference
COMBINEDBrain, Biorepository and Rare Disease Research by Dr. Sarah Poliquin
BBSOAS Center of Excellence Early Findings by Dr. Veeral Shah
NR2F1 Patient Registry by Katia Roda, Patient Registry Chair and BBSOAS Mom
Navigating the Maze of U.S. Disability Benefits by Eric Jorgensen
Implications for NR2F1/BBSOAS Gene Research by Dr. Michèle Studer
Observer-Reported Communication Ability (ORCA) Measure by Dr. Christy Zigler
NR2F1 Foundation Fundraising by Tim Coughlin and Jen Nicholl, Fundraising and Research Committee
NR2F1 Conference Wrap-Up & New President by Carlie Monnier (Jen Nicholl on behalf of Jen Coughlin)
2022 Family & Scientific Conference
180 attendees from 10 countries around the world and 21 from the USA.
Presentations:
Watch all the presentations from 2022 on the NR2F1 Foundation YouTube channel
Clinical Manifestations of BBSOAS Across the Lifespan – Dr. Christian P. Schaaf
Vision Findings From the 2018 BBSOAS Conference – Dr. Jane Edmond
Natural History is Power: The Rare Patient’s Most Valuable Resource – Dr. Terry Jo Bichell
NR2F1 Patient Registry LAUNCH! – Carlie Monnier & Stephanie Fountain
2018 Family & Scientific Conference
30 patients and families from the USA.