Support
Support patients and their loved ones, as well as research projects.
European association · BBSOAS
Together against BBSOAS syndrome
We bring together, in France and across Europe, the families affected by an BBSOAS case. Together, we share our experience to live better with this condition day to day: explaining the disease, the support available and the procedures.
Since 2021Volunteers, families & researchers united
Who we are
A caring community across Europe
The NR2F1 Europe association provides support to people affected by the disorders associated with a deficiency of the NR2F1 gene, as well as to their loved ones.
We share our personal experience to live with this condition day to day and advance research, hand in hand with researchers and clinicians.
The sequence of the NR2F1 gene turned into a relaxing melody. Thank you Michèle.
Our missions
What we do
Support patients and their loved ones, and advance knowledge of BBSOAS.
Promote
Raise awareness of BBSOAS and the associated risks.
Accompany
Support adapted physical activity through sport, heart and health days.
Organise
Voice the concerns of patients to hospitals, researchers and public authorities.
Our purpose
The association’s objectives
1
Bring together the families, in France and across Europe, affected by BBSOAS.
2
Offer help and moral support to patients as well as their families.
3
Provide day-to-day information: explaining the syndrome, how to live with it, what support and procedures are available, and facilitating access to diagnosis, care and support services.
4
Provide information on advances in clinical practice and research.
5
Gather and share the stories of families and patients.
Connecting
The NR2F1 Global Alliance
The NR2F1 Global Alliance brings together partners from around the world — associations, research organisations, governments, universities and industry — who work together to advance international research and discover treatments that change the lives of patients affected by BBSOAS.
It underscores the importance of transparency and connectivity in advancing our collective goal: awareness, education, support and research around BBSOAS.
Join NR2F1 Europe
Your membership and donations support families and research. Every gesture counts.