Advocating for the NF Community
The NF Network is the leading national advocacy organization dedicated to improving the lives of those affected by neurofibromatosis.
Serving the NF Community
We work tirelessly to build and strengthen the NF community as we pursue effective treatments and a cure for all forms of neurofibromatosis.
“The NF Network works tirelessly to serve and build the NF community as we pursue treatments and a cure for NF. We believe that no one should face this journey alone.”
Our Core Values
Compassion
We lead with empathy, understanding the challenges faced by individuals and families living with NF every day.
Equity
We fight for equal access to quality care, clinical trials, and support regardless of background or geography.
Innovation
We champion cutting-edge research and creative solutions to accelerate progress toward effective treatments.
Community
We believe in the power of connection — bringing patients, families, researchers, and advocates together.
Making a Difference
Every day, the NF Network drives change through advocacy, research, education, and community building.
Uniting NF groups across the country under one powerful national voice.
Advocating for federal dollars through the CDMRP and NIH to accelerate NF research.
A proven track record of legislative wins and policy changes that benefit the NF community.
Connecting patients, families, and caregivers with the resources and support they need.
Leadership & Governance
The NF Network is guided by a dedicated Board of Directors and a passionate staff committed to serving the NF community.
Our Board of Directors brings together leaders from across the NF community — including medical professionals, researchers, patient advocates, and community organizers — all driven by a shared commitment to our mission. Together with our national staff, they guide the strategic direction of the organization, ensuring that every program and initiative stays focused on what matters most: serving individuals and families affected by NF.
Interested in joining our leadership or learning more about our governance? We welcome dedicated individuals who share our vision for a world without NF.