Welcome to the GNB1 Advocacy Group
Our mission is to unite families affected by GNB1, a rare genetic disorder, fostering a supportive community. We aim to raise awareness, providing a platform for parents to connect, share experiences, and access valuable resources. Through collaboration, we strive to empower and improve the lives of those impacted by GNB1.
What is GNB1?
GNB1 is a rare genetic mutation impacting individuals worldwide. Named after the affected gene, GNB1 causes a range of symptoms, including global developmental delays, low muscle tone, and seizures. Although there are less than 100 known cases in the world, more frequent genetic testing is revealing a growing number of individuals with this recently discovered mutation.
The GNB1 Advocacy Group is devoted to raising awareness about GNB1, advancing research, and connecting families affected by the mutation and providing them with support as they navigate their unique life journey.
Research
To learn more about existing GNB1 research and research initiatives, simply click on the link below.
Resources
We provide a range of resources to help families navigate the challenges of GNB1 mutation. This includes information on educational resources.
Registry
Join our GNB1 registry to advance our medical research and better understand the mutation. Your participation can make a difference in the lives of those affected by this rare genetic disorder.
Our Stories
By sharing our stories, our community hopes to help others understand more about life with GNB1, each individual experience. We use our stories to raise awareness, help others facing similar challenges to feel less alone, and promote a more inclusive and supportive society. We welcome you to read about our unique journeys.​
Donate Now!
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Your donation can make a significant difference in the lives of families impacted by GNB1 mutations. By contributing to the GNB1 Advocacy Group, you are supporting research and providing resources to those in need. Join us in our mission to improve the lives of those affected by mutations. Donate today!