We believe there is power in numbers — every new diagnosis matters.
For the first time since the Foundation launched (2018), we now have a patient count! Here is our second census this year. Knowing how many individuals are diagnosed helps us share meaningful data with our community of scientists, researchers, and families like yours.
NR2F1 Foundation Global Patient Count
We are now up to 559 total patients across 51 countries! Patient totals by continent and country are listed below.
North America
Country | Patient Count |
|---|---|
Canada | 21 |
Mexico | 3 |
United States of America | 213 |
Total Patients | 237 |
South America
Country | Patient Count |
|---|---|
Argentina | 1 |
Brazil | 8 |
Chile | 2 |
Colombia | 4 |
Ecuador | 1 |
Peru | 1 |
Uruguay | 1 |
Total Patients | 18 |
Oceania
Country | Patient Count |
|---|---|
Australia | 22 |
New Zealand | 1 |
Total Patients | 23 |
Europe
Country | Patient Count |
|---|---|
Belgium | 3 |
Cyprus | 1 |
Czech Republic | 2 |
Germany | 22 |
Denmark | 3 |
Spain | 13 |
Estonia | 1 |
Finland | 7 |
France | 41 |
United Kingdom | 49 |
Ireland & Northern Ireland | 5 |
Greece | 3 |
Hungary | 1 |
Italy | 9 |
Latvia | 1 |
Netherlands | 15 |
Norway | 6 |
Poland | 3 |
Portugal | 2 |
Romania | 2 |
Russia | 3 |
Sweden | 8 |
Ukraine | 1 |
Total Patients: | 201 |
Asia
Country | Patient Count |
|---|---|
Armenia | 1 |
China | 2 |
Hong Kong | 1 |
India | 3 |
Iraq | 1 |
Israel | 2 |
Japan | 2 |
Korea | 1 |
Lebanon | 2 |
Malaysia | 2 |
Philippines | 2 |
Qatar | 1 |
Saudi Arabia | 2 |
Taiwan | 1 |
Turkey | 4 |
United Arab Emirates | 1 |
Total Patients: | 28 |
Africa
Country | Patient Count |
|---|---|
Egypt | 1 |
Total Patients | 1 |
Join or Update the NR2F1 Patient Registry
We’re asking all BBSOAS families worldwide to take part in the NR2F1 Patient Registry. Whether you’re new or returning, your information is vital for research, future treatments, and clinical trials.
Why it matters:
Help doctors and researchers understand BBSOAS symptoms and progression
Support treatment development and clinical trial readiness
See anonymous summaries from other families once you've completed your surveys
Available in 7 languages — just change language via the globe icon after logging in.
How to take part
Register or log in to the NR2F1 Patient Registry (Matrix)
Complete all surveys in your dashboard
Upload your child’s genetic report
Every number tells a story. Every story brings us closer to understanding and improving life with BBSOAS.