Celebrating 41 Years

Neurofibromatosis Network Science Column

The Neurofibromatosis Network, NF Midwest’s national affiliate, has just unveiled their new science column called The Network Edge which will provide a summary of recent highlights from NF research and clinical trials.  The NF Network, through advocacy on Capitol Hill and direct funding of research, plays a central role in progress toward a cure.

Every three months The Network Edge will bring you the latest research news as compiled by science writer, Kim Hunter-Schaedle, PhD.  The goal is to keep you abreast of advancements in treatment and clinical care for all forms of NF.

The Network Edge is presented in bite-sized pieces, allowing you to easily find and focus on those topics of most interest to you, whether it is NF1 learning disabilities studies, NF2 clinical trial updates or schwannomatosis news.


This first Network Edge column opens with a reminder about the importance of federal funding for NF research and the key role that the Network and the NF community (you) play in ensuring that this funding continues year after year.

Among the research highlights reported this quarter:

  • NF Clinical Trials Consortium expanded and funded for a further 5 years
  • Bevacizumab  shows long-term promise in NF2 trials
  • NF1 clinical trial of Sorafenib: lessons learned
  • New study sheds light on NF2 meningiomas, highlights need for clinical trials
  • Developing better endpoint measures for NF clinical trials
  • What is the clinical impact of ADHD on NF1 learning disabilities? New findings
  • NF1 increases the risk of breast cancer: an update
  • Vitamin D supplement improves bone mineral density in NF1
  • Schwannomatosis: retrospective analysis of a population
  • New biology and candidate drug targets for NF1 and NF2


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