Living with BBSOAS

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Tests and therapies

Recommended testing

Our scientific advisors recommend the below tests are carried out after a BBSOAS diagnosis:

  • Developmental assessment for early intervention

  • Comprehensive psychological evaluation for autism spectrum disorder (ASD), autism diagnostic interview-revised (ADI-R), and autism diagnostic observation schedule (ADOS) by a certified clinical psychologist

  • Brain MRI at age three or older

  • Full, dilated eye examination by an ophthalmologist every two years

  • Full hearing evaluation every two years

Therapies

Most of our children with BBSOAS benefit from regular therapies. These include, but may not be limited to:

  • Occupational therapy

  • Physical therapy or physiotherapy

  • Speech therapy

  • Vision therapy

  • Applied behavior analysis (ABA) therapy

  • Music therapy

  • Hippotherapy (horse based therapy)

Registering a patient with the NR2F1 Foundation

We want to keep track of the number of diagnosed cases around the world, so that we can share this with you and our community of scientists and researchers.

By registering with us, you’ll also receive important and helpful communications from the NR2F1 Foundation.

Learn more

Understanding BBSOAS guides

In 2024, we partnered with the UK charity Unique to publish three guides to BBSOAS. The three versions are aimed to cater to all levels of understanding.

  1. Full BBSOAS guide - a robust guide to BBSOAS/NR2F1 for anyone looking to understand BBSOAS and the NR2F1 gene more comprehensively

  2. 'My Chromosome Story’ booklet - aimed at children. This can be used to start explaining a child’s diagnosis to them at a young age. It’s also helpful for siblings and classmates

  3. ‘Easy Read’ guide - aimed at BBSOAS patients who may need a shorter version of the full guide

We’ve also produced a handy one pager explaining BBSOAS for families and medical providers. Some families find these useful to take along to appointments.

  1. Understanding BBSOAS guide

  2. Guide for medical providers

Support Groups

We know as parents and caregivers, living with BBSOAS isn’t easy. Having a network that simply ‘gets it’ can make a real difference. That’s why we host a variety of support groups. The groups are virtual to allow families from around the world to take part.

Learn more

Handy letters to share with your doctors

An open letter from Dr. Jane Edmond for eye care providers about management of BBSOAS related to vision. Download Dr. Edmond’s letter and share with all eye care providers.

BBSOAS CVI Clinic information

Dr. Veeral Shah is a pediatric neuro ophthalmologist in the Division of Pediatric Ophthalmology at Cincinnati Children's Hospital Medical Center (CCHMC). He’s also a member of our Foundation Scientific Advisory Board.

Dr. Veeral Shah meets BBSOAS patients in his clinic. To schedule an appointment with him, contact CCHMC ophthalmology@cchmc.org and Jillian.Magner@cchmc.org.

Emails will be responded to within 7 days of receipt. Please allow longer during US holiday periods.

How to read your genetic report

When you receive your diagnosis, you will have been given a copy of your genetic report.  For most of us as caregivers, it is hard to read and interpret.  Our Scientific Officer has created a guide to help interpret your genetic report, and understand the type of mutation.

Download How to Read Your Genetic Report

Support our work

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