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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-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


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



Epilepsy Foundation of America



Pain in Neurofibromatosis Type 1 Page


Recorded Webinars

When to Worry About Cancer in NF1 with Dr. David Gutmann provided by the NF Network Video

NF1 General Information for Families with Dr. Maria Acosta provided by NF Mid-Atlantic Video

Los fundamentos de la Neurofibromatosis 1 – Dra. Maria T. Acosta.wmv provided by NF Mid-Atlantic Video

10 Things Everyone Should Know About Their NF1 with Douglas Stewart, MD provided by the NF Network Video

Glossary of Terms