About Us
The GNB1 Advocacy Group is a 501(c)(3) non-profit organization with public charity status. Our group is made up of passionate people- parents, caregivers, loved ones, doctors, and scientists- fighting for a better future for individuals affected by GNB1 syndrome. We are hopeful that, together, we'll find a treatment for our kids in our lifetimes.
Our Story
Although our group was formalized as a non-profit in 2024, we started as a Facebook group, joining forces with researchers studying GNB1 and sharing our stories with those who understood our unique journey.
Our Mission
The GNB1 Advocacy Group’s mission is to transform the lives of children affected by the rare genetic disorder GNB1 by advancing research, fostering a supportive community, and empowering families. We are dedicated to raising and allocating funds to support research aimed at better understanding GNB1 and improving care and outcomes for those affected.
We are a group run by parents who are navigating this journey ourselves. Our experiences drive our commitment to advocating for all children with GNB1. We aim to do what’s best for every child and family by listening, learning, and working together.
We strive to provide comprehensive resources, support, and practical assistance to parents and caregivers, helping them manage the complex realities of GNB1. Beyond support, we work to create a strong and connected community where families can share experiences, offer encouragement, and join together in advocacy efforts.
Our approach is rooted in openness, honesty, and collaboration. We are dedicated to working alongside researchers, medical professionals, and families to advance knowledge and develop meaningful solutions that improve quality of life for those affected by GNB1.
Through our shared efforts, we aim to amplify the voices of the GNB1 community, raise awareness, and build a future shaped by understanding, support, and hope.
The GNB1 Advocacy Group are proud members of and partner with the following organizations:
