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Neurofibromatosis Midwest


NF1 Resources

Overall Care

Information for Medical Professionals PDF

Neurofibromatosis Type 1 Revisited from Pediatrics, Official Journal of the American Academy of Pediatrics 2009 PDF

Clinical Manifestations and Management of Neurofibomatosis Type 1 by James Tonsgard, MD 2006 PDF

Primary Care for Patients with Neurofibromatosis Type 1 by Leigh Hart, RN, CCRN, PhD, in Nurse Practitioner 2005 PDF

Possible Complications of NF1 Shown on BodySheet PDF

Vascular Disease in Neurofibromatosis-1 Page

Neurofibromatosis Type 1 and Aging (webinar)Page



Optic Gliomas – Article by Dr. Robert Listernick 2012 Page

Optic Gliomas – Webinar from the NF Network Video

Insurance Coverage of Fibroma Removal PDF

Tumor Suppressor Research Video


Psychosocial Related Resources

Socialization Issues in NF1 – Slides from a presentation by Dr. Scott Hunter (University of Chicago) at an NF Midwest Symposium in October 2013 PDF

Social Emotional Development in Children with NF – Sandy Cushner-Weinstein, PT, LCSW-C (Children’s National Medical Center & Camp New Friends) Video from the NF Network in September 2014 Video


Learning Related Resources

For resources, articles, video etc. on learning and school issues.  Page


Children Related Resources

For helpful links, articles, etc. relating to children issues with NF, chronic illness, coping and more. Page


Women Issues and Family Planning

Reproductive Options for People with NF1, NF2 and Schwannomatosis by Amanda Bergner, MS CGC, Johns Hopkins University Page

Women with neurofibromatosis 1 are at a moderately increased risk of developing breast cancer and should be considered for early screening by S Sharif, A Moran, S M Huson, R Iddenden, A Shenton, E Howard, D G R Evans PDF



Seizures in Neurofibromatosis Type 1 – article by Nikolas Mata-Machado, MD , Loyola University Page

Understanding Seizures in NF1 – with Dr. James Tonsgard (University of Chicago) provided by the NF Network from May 2014 Video

Epilepsy Foundation of America



Pain in Neurofibromatosis Type 1 – article by Staci Martin Peron, PhD and Andrea Baldwin, CRNP from the National Cancer Institute, National Institutes of Health Page



Whole Gene Deletion in NF1 – article by Heather Radtke, MS, CGC, Children’s Hospital of Wisconsin Page


Recorded Webinars

Find ALL Webinars/Recordings Webinars

Glossary of Terms