Our strategic objectives
The NR2F1's strategic vision for 2023 - 2027 consists of three strategic objectives or "pillars". These pillars were identified through an organizational assessment and a two-day strategic planning meeting in January 2023. These pillars will help to guide our organizational priorities over the next five years.
Education
Advocacy
Research
For each pillar, key measurable goals have been defined. The NR2F1 Foundation's Board of Directors define priorities and activities to achieve these goals and report progress on an annual basis.
Education
The NR2F1 Foundation has been a pioneer in providing information about BBSOAS / the NR2F1 gene since its inception. Education about the disorder remains an ongoing commitment and priority to our community.
Key goals
Provide understandable and accessible resources about BBSOAS / NR2F1 to multiple stakeholders
Bring together existing published literature on BBSOAS / NR2F1 into a central repository on the NR2F1 website
Grow the NR2F1 Educational Conference by 20% every two years and be bold in our efforts to engage more families
Our progress
Brand new simplified and accessible website available in 8 languages
Resources for Researchers page with relevant information
2024 Conference - 132 attendees and 23 BBSOAS patients from 11 countries (vs 10 in 2022) around the world and 23 from the USA (vs 21 in 2022)
Advocacy
It is estimated that BBSOAS affects 1 out of every 250,000 babies born each year. This means that approximately 4,000 babies are born annually with a change in their NR2F1 gene around the world. As the number of BBSOAS cases increases annually through better awareness and identification of the disorder, we believe it is our responsibility to connect with, engage, and empower NR2F1 families across the globe.
Key goals
Support & engage individuals with BBSOAS and their families across the globe through the delivery of four virtual parent support groups every year
Represent the NR2F1 community to external parties to help raise awareness of BBSOAS and accelerate research
Our progress
President and Dr Christian Schaaf presented to UK NHS teams
Research Chair attended 2 industry lead research symposiums
President / Vice President - 4 conferences attended
Research
The NR2F1 Foundation is leading the charge to increase research in BBSOAS / NR2F1. We do this through community engagement, data collection, partnerships, awareness, and funding basic and translational science. We will continue to accelerate BBSOAS research over the next five years in the following ways:
Key goals
Empower and engage families in research through collaborative projects including the NR2F1 patient registry
Strengthen relationships with existing partners invested in research for NR2F1 while building new, powerful collaborations
Engage the scientific advisory board and external researchers to build a research strategy
Our progress
Increased Patient Registry sign ups through annual 'Patient Registry month'. Current 150 registered accounts
Strengthen relationships with existing partners invested in research for NR2F1 while building new, powerful collaborations
Engage the scientific advisory board and external researchers to build a research strategy