May NF Awareness Month:
Being Different is Beautiful

Affecting every 1 in 2,500 births, neurofibromatosis is the most common genetic disorder that most have never heard of. Neurofibromatosis affects every individual differently – no two cases of NF are the same. The variances of NF can make navigating NF care challenging, and one can never be 100% sure of what comes next. However, in those variances and differences, we find that being different is beautiful.

Throughout the month of May, we want to share your NF stories and spread awareness through the many beautiful faces of our NF community. Using the hashtag #BeingDifferentIsBeautiful, you can post your story on social media, or email your story to us at admin@nfnetwork.org. We would love to see pictures of you and your family, as well as other ways you are celebrating and spreading awareness for NF Awareness Month!


Gilbert Family Foundation Invests $18M Toward Gene Therapy Initiative


The Gilbert Family Foundation, a private fund established by Dan and Jennifer Gilbert, announced Thursday it is funding more than $18 million in grants toward NF1 research. The money will fund a three-year campaign as part of the organization's Gene Therapy Initiative.
Stanford Conducting Remote Study for Adults with NF1


Stanford University is seeking participants for a free, remote genetic testing study. This research will study the genes of adults with neurofibromatosis type (NF1) to help researchers understand why some are more likely to develop certain disorders and manifestations, such as increased cutaneous neurofibromas.
Join the NF Network Near You!


Our event chairs are hard at work preparing for an engaging events season. This summer and fall, we are excited to bring our new and long-running events to areas across the country. Our #NFStrong events and NF Hope Concerts are entering a new phase to bring excitement and community to our NF friends and families, and we look forward to having you join us!
Being Different is Beautiful: Caroline's Story


Caroline Hunt has NF1 and actively participates in the pageant circuit. Using her platform "Being Different is Beautiful," Caroline has raised awareness for her genetic disorder. We need your help to spread the word this May during NF Awareness Month!

Upcoming Events
The mission of the NF Network is "to find treatments and a cure for neurofibromatosis by promoting scientific research, improving clinical care, and providing outreach through education and awareness while offering hope and support to those who affected by NF."

Will you join with us?