- Be iNFormed
- NF Type 1
Receiving a diagnosis of neurofibromatosis with an NF1 gene deletion can bring up a lot of questions. We want you to know that you’re not alone. Our community is here to provide you with clear information and unwavering support every step of the way.
Understanding NF1 Gene Deletion
In most cases of neurofibromatosis type 1 (NF1), there is a small change in the NF1 gene. An NF1 gene deletion is a bit different—it means a larger piece of the gene, and sometimes neighboring genes, is missing. While this can sometimes be associated with a higher chance of certain health issues, it’s important to remember that every person’s journey with NF is unique.
For a deeper dive into the specifics, we are sharing a helpful article that breaks down the research and what it might mean for families. Please remember, this is for informational purposes, and you should always discuss your specific situation with your medical team.
We Are Here to Help
Navigating this journey is easier when you have the right resources and a strong support system. We offer several programs and services to connect you with the care and community you deserve.