Raise Your Voice for NF Research,
Contact Your Representatives!

Back in February, over 240 congressional offices were educated on the exciting achievements in the world of NF and the importance of continued federal funding for NF research. Now, we need your help to contact your representatives before the "Dear Colleague" letter deadline on April 19th. In less than 2 minutes, you can make an impact on the future of NF research!


Update on NF1 Research from SpringWorks Therapeutics


SpringWorks Therapeutics is currently conducting a clinical trial for an investigational MEK inhibitor called mirdametinib in patients with NF1-associated plexiform neurofibromas. Their update includes answers to those interested in learning more about the study and more information on clinical trials.
Cabozantinib for NF1-Related Plexiform Neurofibromas: A Phase 2 Trial


Based on preclinical observations, the NF Clinical Trials Consortium launched a clinical trial to determine the response rate of cabozantinib on NF1-PNs in patients 16 years and older. The phase 2 trial showed promising success, saying lower doses of cabozantinib may be optimal for the NF1 population and still lead to therapeutic response.
Celebrate Broadway with NF Hope Concert Live Stream, Second Edition


Theater royalty and Broadway's brightest stars join the all-star line-up for the NF Hope Concert Live Stream - Second Edition on Sunday, May 2nd. Join us for a night of entertainment in support of the NF Network and the thousands of NF families across the country who need our help.
Paul Mendelsohn, Longtime NF Advocate, Passes


Paul Mendelsohn worked tirelessly alongside his wife, Helen, as a pioneer in the NF2 community. A founder and the first president of what is now the Neurofibromatosis Network, Paul’s advocacy and dedication impacted our NF community nationwide. His legacy is his friendship with many and his inspiration to all.
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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?